Rom and Debby's Blog

Chemo Chronicles XVI

2006-10-31T21:21:00.000-08:00

Chemo Chronicles XVI – October 29, 2006 and Oct. 31st [Boo-oo-oo]

This is a long one. Why not go get a cup of coffee, tea or something stronger.

Today is my birthday, and though there are many reasons not to celebrate, I’m 55 and alive, and that’s saying a whole lot.

It’s been almost 2 months since I last wrote, and what a two months it’s been. I think I’ll just tell you about it chronologically – it will be easiest that way.

When I last wrote I’d just had my 10th out of 52 doses of Herceptin. Things were going well and we’d settled into a pattern of work, taking care of my dad, and being a family. I was spending about 2 hours a day with Dad, who had settled in quite well in the skilled nursing facility. Though much of who he used to be was locked away in the recesses of Alzheimer’s Disease dementia, enough of him was still there that the folks who worked with him came to love and admire him. He still had his sense of humor, which, although changed from its former sophistication, was still engaging and endearing.

Avi started his new school in early September, and we continue to see something that we haven’t seen in years – Avi gets up in the morning and gets ready for school without the constant nagging on our part, and resistance on his part, that made mornings a gruesome affair at 615 Kains Ave. This school specializes in working with kids with learning disabilities who have not been able to get the support that they need in a public school setting. It’s called a non-public school, which is different from a private school. Students must be referred by their public school, and our school district is paying for Avi to go to this school, and even providing the transportation that gets him to and from school every day. Each morning at 7:45 a van pulls up at our house to pick Avi up, and every afternoon he’s dropped off back at our home at 3:00.

On September 13th, I had an echocardiogram, then went and had my 12th infusion of Herceptin. The echocardiogram, essentially an ultrasound of one’s heart, is part of the protocol with Herceptin, a medication that’s only been out of clinical trials for about a year and half. It’s known that Herceptin can cause damage to the heart muscle, so the protocol is a baseline echo before you start Herceptin, then another echo every 3 months. This heart muscle issue, by the way, is a totally separate issue from the mitral valve repair that I had a year and a half ago. Using the echo, the docs measure something called “ejection fraction,” which essentially tells them how well your heart muscle is pumping blood out to your body. Anything above 50% is considered in the normal range. My baseline was a respectable 60%. When they did my echo in September, it had dropped to 48% - just a little below normal, but a 20% reduction from what it had been at baseline. That must have set off a bunch of bells and whistles, because I got a phone call from my cardiologist that evening telling me that I had to stop Herceptin for a month, then do a repeat echo – if my heart had recovered to baseline, they’d consider “challenging it again” with Herceptin. But, he also told me, this problem actually could have been caused by the Adryamycin – that most toxic of agents that I received 4 times during my first round of chemo. There’s really no way to tell which one caused the problem, though it would be better if my heart recovered to baseline when they did the 2nd echo. So, we stopped the Herceptin, and scheduled a repeat echo for October 11th.

On September 27th I went and had a two-hour parent-teacher conference with Allen and Mike, two of Avi’s teachers. Avi is in a class of 12 boys (I can’t even imagine the level of testosterone, or the smell of that classroom!). Besides Avi, there is one other boy who’s in the 8th grade; the rest of them are high-school aged. When I first got there, Mike asked me if I could pick out Avi’s desk. I thought that would be easy – Avi’s desk has always been the messiest desk in the classroom. There were two that looked that way, so I naturally assumed it was one of those. Avi’s desk was actually one of the neatest in the room – I already knew that something was vastly different. Allen is African-American, and Mike is Jewish, so Avi can’t pull some of the cards that he has in the past (“You don’t like me because I’m African-American/or Jewish,” and the like). Although it became clear that Avi is struggling with the structure and the strong behavioral program, it was also clear that Avi is doing schoolwork and learning. Most kids do tend to struggle with the differences between this school and the public school setting from which they’ve come, but eventually they all realize that by “working the program” they can rise up through the Level System, getting more privileges as they do. Some of them even realize that by working the program they also are getting the support that they so sorely need and weren’t getting. Avi is nothing if not tenacious, so I imagine it will still take him a while before he’s really working the program, although things are shifting. He’s still Avi – bright and engaging, with a hysterical sense of humor. That Wednesday when I met with his teachers was a few days before Yom Kippur. That day Avi had announced that he wouldn’t be in school on Thursday and Friday – since he was now a bar mitzvah, he would be fasting for the first time on Yom Kippur; he was taking Thursday and Friday off to practice! [no, he wasn’t]

I felt so wonderful that evening, knowing that Avi was in the perfect school program, and appreciative of his teachers. Thursday morning, just after Avi was picked up for school, our phone rang, and when I answered it, someone was crying hysterically on the other end of the line. It took a minute to figure out with whom I was speaking and what was going on. The person on the other end of the line was Glenda, sister of my youngest sister, Becky’s, on-again off-again boyfriend, telling me that Becky was dead. It didn’t even compute at first – I had just seen Becky on Tuesday. She had finally gotten a ride up from Modesto with an old family friend and had come to Berkeley to see Dad. I jumped out of work for a bit and went over to the nursing home to see her.

The story that I got from Glenda was very confusing, but she did tell me that her brother had found Becky unconscious on the floor in the middle of the night, and had called 911. I got the name of the hospital to which she’d been taken, and called them. They verified that Becky had been brought there, but that she indeed was dead, and that her body had already been taken to the Coroner’s Office. I got that number, called them, and was told that her body was there, but that the Coroner hadn’t even taken a look yet. I was still in shock, working on automatic pilot, when I called my sister, Judi, who lives east of Sacramento, and my brother, Jack, in Israel. I called our rabbi, too, while I hastily through things into an overnight bag, getting ready to drive down to Modesto.
That drive was reminiscent of the one I took 10 years ago, after hearing that our mom had died. I think it even started to hit me at about the same point in the drive – right around Castro Valley. What happened? Was she in pain or distress? Was she alone? Did she know she was dying? Was she scared? I don’t suppose it’s the safest thing to be barreling down the freeway at about 70 m.p.h. crying your eyes out, but I managed to get to Modesto without causing an accident.

Over the phone, Judi and I agreed to meet at Becky’s house, and when I pulled up, she was already there. Going into Becky’s house, we began to get a flavor for what her life must have been like the past few years. Becky had viral meningitis a few years back, and hadn’t worked since then. She’d been having seizures as a result of the meningitis, and the Coroner now says that she most likely died of complications from a seizure. She also struggled just living life – trying to figure out how to make it all work for her, but not succeeding. Her house was as chaotic as her life must have been.

We started dealing with all of those things that you have to deal with when someone dies. Judi had already made an appointment at the mortuary, where the Graudenz name is fondly remembered because of all of our dad’s years as the rabbi in that community. With both of our cell phones constantly going off, we made the arrangements in tag-team fashion. The Jewish community in Modesto was incredible, setting up Tahara (the ritual washing of the body) and a schedule for Shmira (the ritual of always having someone with the body until it is buried). We still didn’t know when Becky’s body would be released by the Coroner’s office, but everything was in place. From there, we went out to the cemetery to find a plot for her. Our mother is buried in the same cemetery, and Dad had purchased a plot next to Mom – the folks at the cemetery had already figured out which available plot was closest, and we agreed with their choice. They even arranged to do something that’s not normally done – to open a grave on Sunday morning so that we could have Becky’s funeral then. Sunday was the day of Erev Yom Kippur, and we really didn’t want to have to wait until Tuesday to bury her. Again, because of Dad’s long-standing working relationship with them, the cemetery was incredibly accommodating.

I’m glossing over all of this – I arrived in Modesto at about 9:30 in the morning – we finished at the cemetery at about 5:00 in the afternoon. It’s amazing how long this process takes; and astounding how much it all costs. Because Becky’s body still hadn’t been released by the Coroner’s office by the end of that day, Judi and I stayed overnight in Modesto. Well, actually not in Modesto proper. We weren’t going to stay in Becky’s house, and headed for a hotel, thinking we’d just check in. There were no vacancies there, or in any of the other respectable establishments – being the middle of the week, they were all booked with business travelers. In Modesto … who woulda thunk! We ended up in a hotel in Salida, a town just north of Modesto that had a population of about 3 ½. when I lived in Mo-town in 1969.

Friday morning Judi and I met with Joel Youngheim, the family friend who had driven Becky to Berkeley two days before she died, and who would be officiating at her funeral. The synagogue in Modesto is between rabbis at the moment, and a few lay leaders have taken on some of the functions usually performed by a rabbi until they hire one. Becky and Joel grew up together, and even “dated” for a short time. I was in Israel then, but Joel shared with us the two family myths from that era: he would become a rabbi, and he and Becky would get married. Neither of those happened, but he was the perfect person to officiate. In the early afternoon we heard from the Coroner’s office telling us that they were releasing Becky’s body, though they wouldn’t have a determination of what caused her death until the blood tox screen came back – then Judi and I each took off for our homes.

Becky’s funeral was at 10 the morning of Erev Yom Kippur. After the Se’udat Havra’ah (the meal of comfort, or healing) we all headed home again. Jewish traditions around death and mourning make a lot of sense to me. After we bury a relative, we “sit shiva,” “shiva” being the Yiddish-ization of sheev’ah, the Hebrew word for seven. “Shiva” is usually a 7-day period of intense mourning. But the festivals of Sukkot, Pesach and Shavu’ot, and Rosh HaShana and Yom Kippur end shiva. So we didn’t really have shiva for Becky – we got home from Modesto, I sat on the floor for 2 hours, got up and walked around the block (a tradition from shtetl days, when one would literally walk around the village to signal a return to every day life), ate a quick meal, then got ready to go to shul for Kol Nidre, the beginning of Yom Kippur.

I was scheduled to lead Shacharit, the morning service, on Yom Kippur. Our rabbi had a backup plan in case I didn’t feel up to it, but in the past few years I’ve really started to understand what my father always said about leading prayers and davening (praying) – that it gave him strength. Maybe it sounds hokey, but I find it comforting. When I got off the bimah, though, I suddenly didn’t want to be around people, and I came home.

Okay, I’ll admit it right now – fasting was a stupid idea. I felt fine as far as fasting goes on Yom Kippur. And I even started out the next day feeling all right, but by late morning things weren’t looking so good here. I tend to downplay what ever might be going on for me physically, but Rom’s always there, watching my back, and we ended up in the emergency room till about 10:00 that night. They ran a bunch of tests (Yes, Virginia, the CAT scan proved that I really do have a brain), and when things looked better, they let me go home.

The next morning, Wednesday, Judi called to tell us that Dad had been taken to the emergency room in the middle of the night. They called her in the wee hours, and she mentioned that I’d just left a couple of hours before. The nurse with whom she spoke told her that they’d had a shift change since then and Judi, quick-wit that she is, wanted to know if they were going to name a wing at the hospital after our family. Avi was already off on his way to school, so Rom and I headed over to the hospital, where Judi was already with Dad.

Dad had pneumonia, and when they did blood work on him when he first got there, they also found that he had a blood sugar level of 700. That didn’t mean anything to us until they told us that the normal blood sugar level is – if I remember correctly – between 85 and 120. Since Dad had no history of diabetes, this whopping figure was a bit of a concern. When we got there Dad was getting an IV drip of insulin, along with IV antibiotics and fluids. That first day in the hospital was really rough – a simple blood test (which had to be done every 2 hours) was a long, torturous process of first trying to find one vein after the other, since Dad’s veins would collapse. Respiratory therapy had it’s own form of torment trying to get the gunk out of Dad’s lungs. But nothing was really changing. Dad was restless all day, twitching uncontrollably, and fading in and out of little moments of some kind of consciousness. We held Dad’s hands, sang to him and did our best to make him as comfortable as possible. Former students of Dad’s, all of who are adults, and some of who have kids of their own, came to see Dad.

After Judi and I left to come back to our house, Rom, Joel and Aaron decided to have pizza. Aaron picked up a pizza, along with a small bottle of J&B – what Dad used to call “Jewish Booze.” Rom, Aaron & Joel poured some into paper cups to drink a l’chaim to Rabbi Graudenz. Rom took a spoon, dipped it into the scotch in his cup, then put the spoon on Dad’s lips. They tell us that when Dad tasted the scotch he opened his eyes and looked at each of them, all the while with a big grin on his face. Then he closed his eyes and went back to sleep.

We had Wednesday and Thursday to say goodbye to Dad. Our rabbi came to visit with Dad, and went through the Jewish religious practices that one does as they are dying. Our rabbi told us that Dad knew exactly what was going on, saying that Dad was “mumbling right along with me.” Rom spent Wednesday and Thursday nights in Dad’s hospital room. He didn’t go to sleep Thursday night – maybe he had a premonition. He was with Dad when he died very early Friday morning, saying that Dad very peacefully just drifted away.

Friday evening was both Erev Shabbat and Erev Sukkot. It’s Jewish religious practice to bury someone as quickly as possible, and though in Israel one might be able to still bury someone who died early Friday morning that same day, things just aren’t set up the same way here. Dad’s body was taken down to Modesto on Friday, and again the synagogue community came through, providing Shmira until Sunday night, when they were able to do Tahara, and then again until Monday morning, when we had his funeral. It was more than a little surreal, being back in that same hotel Sunday night. The funeral service began at the synagogue in Modesto, then we went out to the cemetery, then back to the synagogue for the Se’udat Havra’ah.

And here, things got strange again. Remember earlier when I said that the festival of Sukkot is one that stops shiva? It also delays shiva. So, though we buried Dad on Monday, October 9th, we weren’t able to begin sitting shiva until Sunday evening, October 15th. Being in limbo doesn’t even begin to describe what that intervening week felt like. Since I wasn’t yet sitting shiva, I actually worked some days that week. I also had my repeat echocardiogram done that week. And I found out that my heart muscle hadn’t bounced back, and that I wouldn’t be able to continue getting Herceptin.

It felt weird to begin sitting shiva almost a week after my dad’s funeral. But it was probably the waiting that was weirder. Our friends and shul community were wonderful during the week of shiva. We had meals delivered here for dinner every evening, someone was always here an hour before the ma’ariv minyan (the evening prayer service), and someone always stayed to clean up after everyone else had gone. I’d brought Dad to our shul quite a few times over the years, and people shared their memories of interactions they’d had with him. My brother, Jack, and his wife, Elicia, were here that week, and though they didn’t stay with us, Jack and I had time to go through old papers of Dad’s from Europe, Japan and Shanghai and to look at old black & white photos from the Seattle Hebrew Day School – where we went to school, and where Dad was the principal, when we were kids.

I’m still trying to sort out all of my feelings. Although Becky had been having an incredibly difficult time, her death was still a shock. Sadness, guilt and anger run up against each other in my head and in my heart. Dad would have been 90 this past Wednesday – he lived an amazing and full life, taught and lived by the Torah, touching and helping more people than we will ever know. We had the fortune of saying goodbye and the comfort of knowing that he is remembered and loved by many. I miss them both terribly.

Avi’s been pretty incredible through all of this. I told him that he could hang out by the cars at Auntie Becky’s funeral if that would be easier for him, but he came into the cemetery. He was hanging at the periphery of those there, but then I saw him take a shovel out of the pile of dirt and, like everyone else, help cover her coffin. When we realized that Dad was dying, I sat him down one afternoon, told him, and asked if he wanted to come to the hospital to see Opa one last time. He said no, was silent for a few seconds, then said, “Ima, I’m 13 years old, and I’d never been to a funeral. Now you’re telling me that I’m going to go to 2 funerals in 2 weeks …. Who did you piss off in a former lifetime?” He hasn’t said much about any of this since my dad died, but one night of shiva, after everyone had left the house, he lay on the living room couch, stuck a pillow over his face and said, “I just can’t believe Opa’s dead.” Sometimes, me neither.

Back on the cancer front – my oncologist is back! She’s been out since the end of June, when she went away for 2 weeks vacation. Although to look at her you might be hard-pressed to imagine that this is what she’d do on vacation, she was mountain climbing in Alaska, fell and smashed her ankle. She’s finally back at work this week. My guess is that she’ll agree with what I’ve been told, which is that I’m done with Herceptin. I’m doing well, though; I’ve got no mets (metastases), and I’m feeling good. I don’t even notice any symptoms from what’s going on with my heart, so I’m guessing they caught it very early. I was told that I’ll need to keep my port for another year. If I’m still cancer-free then, I can have it removed.

Then you’ll all be invited to my port-a-party (thanks, Linda).

Rom might have some photos to add on the blog page www.romdeb.blogspot.com

Be well!
Debby

Rom and Debby's Blog

2006-08-31T16:53:00.000-07:00

Chemo Chronicles XV

Hi everyone,

I just realized that it's been over a month since I've written an update.... So much has happened in the world, in our group of friends here and in Israel, and in our family.

Right now, as far as I know, there's still a cease fire in Israel. The "matzav" - the situation - has been in many of our thoughts and prayers. Just a few evenings ago Avi and I went to a reception for the Arava Institute for Environmental Studies, which is at Kibbutz Ketura in the Southern Arava, where Rom and I (and many of our friends) used to live (well, some of our friends still live there). The Arava Institute brings Jewish (Israeli and other nationalities) and Arab (Christian and Muslim from within Israel, the West Bank, Aza, Jordan, Egypt) students together to study the environment. The students live together for at least a semester - they study, do research, and talk about living in the Middle East together. This weekend, here in Northern California, is what I think is called the Peace Makers family camp - a long weekend family camp for Arabs and Jews - to learn about each other, and to develop ways of continuing dialogue in their home areas. These are just two small efforts to acknowledge the "human-ness" of living in the Middle East, and to try to make connections and pathways to peace through that human contact. I sure don't know any other way to even hope that peace will come.

We've had great reasons to party here - Nitza's & Joe's wedding; a party for Donna and Idan, who were married in April and were here visiting from Israel (they just left to go back this morning), having Maya here for a while from The Hague, and welcoming Amitai for a visit from Israel after some tough army duty before the cease fire. Hillel's mom, Betty, is doing well after surgery and some scares, another great reason to celebrate and be thankful. We've laughed, danced, and taken some really goofy pictures. It's been truly wonderful to share celebrations with friends.

I am doing really well. I think my body has finally figured out how to adjust to this new biologic agent, Herceptin, that I'm getting once a week. The first two months were harder than I thought they would be - though I might still have been getting over the side effects from radiation. I just had my 10th infusion of Herceptin yestereday - only 42 more to go! - and I actually feel pretty good. I was even at work today for 5 hours. I still have some side-effects left over from earlier rounds of chemo, and I still have neuropathy from both the shingles and chemo, but I haven't dropped anything in a pretty long time, and I've only asked new people at work their names 5 or 6 times. What I can't cover? - hey, that's why we have pharmaceutical companies. And what they don't cover? There's always medical marijuana. Did I mention that sometimes you just have to tough it out?

I started back to work part-time at the beginning of August. In about 2 weeks I'll be up to 20 hours a week. That's all that my agency has to offer at the moment, which is probably physcially enough for me right now. It feels good to get back to work and have my focus be on doing something. I realize that I have been, and am, doing something - fighting off cancer ... that just feels so self-involved after a while.

Oh, that's because it is.

Rom and Avi are doing well. Okay, that's more in general terms. Right now Rom's flat on his back because he "threw his back out," or what ever you call it. The guy finally gets two days in a row off - and look how he has to spend them. Talk about not fair. He's going back to work tomorrow, and I can tell you, I wouldn't want to be the pain management guy in HIS brain right now.

Avi hasn't started the school year yet, though most of his buddies have. His first day will be Sept. 6th. He'll be starting in a new school this year, one that works with kids with learning disabilities. We're hoping that the small class size (13 kids in his class, if I'm not mistaken) and their experience teaching students with learning disabilities, will help Avi catch up, learn skills that public school hasn't figured out how to teach him, and regain his self-confidence in the world of school. Avi liked the idea last year - now he thinks it's a "dumb idea." Of course, that might have something to do with the fact that he's 13, the idea originated with us, and that the end of summer means that any idea having to do with school is a dumb one. Go figure.

Speaking of "go figure," Rom and I did something that I never would have believed. We're Jewish parents, mind you. We agreed to let Avi play football (for all you folks in Israel, that's American football, not soccer). Shoulder pads, mouth guards, cleats - the whole 9 yards (well, I guess that's 100 yards). Everything that I know about football I learned from Bill Cosby albums in the '60s - "Why is There Air" comes to mind. Meaning, I know zilch about football. He's played a couple of scrimmage games and I have to say, I have no idea what the hell is going on. Half the time the play is over before I can even find where the ball went. I grew up on baseball - put me at the ball park, ask me anything about that sport, and I'm fine. But this one? I'm lost. Do they have football school for adults? I know I've had to go to traffic school ....

I'm sure I've taken more of your time than you thought you'd be devoting to this stream of consciousness rambling. If you're interested in previous romps through my subconscious, or pictures that we've posted along the way (those were real and had nothing to do with my subconscious), you can see them in our blog at www.romdeb.blogspot.com (I know, last time I put the address out I forgot to mention the "romdeb" part of it - chemo-brain strikes yet again).

To everyone watching Elul melt before our eyes, Shana Tova U'metukah - may you have a healthy and happy new year, and may we all see peace in the coming year. Actually, even if the new year doesn't come toward the end of September for you, that wish still holds.

Enjoy the end of summer, and the long weekend (here in the States).

Love to all,

Debby

Chronicles XIV Update

2006-07-21T11:54:00.000-07:00

Hi everyone,

Just a quick bit of good news. Hours of phone calls, emails and faxes paid off - the union health and insurance trust fund finally agreed that it would be patently absurd for us to knowingly miss an insurance premium payment while I'm in the middle of cancer treatment, and, for a "small" administrative fee, has reinstated our insurance!

Mike C., thank you for your offer, which we surely would have taken up had the union decided otherwise. For the rest of you, Mikes offer was:

If the Union and the health insurance trust don’t roll over, let me know and I’ll see what I can do about getting you a list of and/or hooking you up with the meanest m-f pitbull lawyers in the world to champion your cause.

I don’t have much else to say, except L’Chaim! And Shalom!
One last thing, Rom finally posted a picture of me with my hair grown back in on the blog. You even get to see my dad.

So, now I don't have much more to say either, except if you're here in the Bay Area enjoy this lovely weather, and to all - Shabbat Shalom.
Love,
Debby

Chemo Chronicles XIV

2006-07-17T22:13:00.000-07:00

Hi everyone,

This is fair warning - I'm in a talkative mood, and so much has happened.

But, first of all, today I had my LAST radiation treatment! My radiation team gave me a certificate - and I gave them a bunch of more colorful paint-pens. Before I started radiation treatments they gave me 3 tiny dot tattoos that then were used every day to line everything up. But, just so they could line up really well, every day or two they'd put 3 little lines around the dots with black or blue Sharpie pens. Then, about two weeks before I started the "boost" treatments, my radiation oncologist came in and used a blue Sharpie to outline the area that should be hit with the boost. One of the techs who did my treatments every day then immediately re-drew the circle with blue paint-pen (that way they didn't have to re-draw it every day, only every 3-4 days). But I got tired of all the black and blue and asked if they had another color (hey, I figure if I've got to walk around with a target painted on my boob, I ought to at least have some say in the color). Someone finally came up with a purple one, but that was it for my color choices. I've taken care of that little oversight for their future patients.

Avi left on his second 2-night overnight with his day camp this morning. Unfortunately, Rom is working all of the days that Avi's away this time. For those of you who don't know what Rom's work schedule is like - he's an audio engineer for sports television. Right now it's the thick of baseball season, and with both the A's and Giants here, he works a lot. He had to be at the Giants' ball park at 2:30 this afternoon, and will get home sometime after 10:30 tonight, depending how long the game takes, whether or not they have to pack up the TV truck (or if it's staying over for another game). But I don't have to be at the Cancer Center tomorrow morning at 8:30 for radiation, so who says I can't stay up late? Avi had a great time on the overnight last time, and was so jazzed about this one that instead of just about having to drag him out of bed, he was up before we were, and when we got up was jabbering away a mile a minute. I hope he has at least as good a time on this overnight as on the last one.

I think I've really come to accept that my dad is a nursing home patient and will be so for the rest of his life. He can no longer walk or even stand, but is lifted in and out of his bed and into/out of his wheelchair for every meal. He tends to want to go back to bed shortly after every meal, so I try mainly to visit him at a meal time and be sure to catch him awake. He's confused a lot, but has moments of utter clarity. He seems content, and still has a wonderful sense of humor. I know I've mentioned that my dad's food needs to be pureed. His medications are crushed, then mixed with a little applesauce - the nurse then comes at meal time and gives him his meds. Yesterday evening she came and sat down next to him just as he was finishing dinner. This one nurse is funny, and really good with the residents. She has a different way of approaching each of them, basing her approach on each resident's personality, quirks, etc. So, she sat down next to him, tapped his shoulder and said, "Hi Rabbi, I'm your nurse and I have your medication." He took the first small spoonful, made a face that said it didn't taste good, then held his hand up to her to let her know he didn't want anymore. Knowing her Alzheimer's patients, she waited a couple of minutes, tapped him on the shoulder and said, "Hi Rabbi, I'm your nurse and I have your medication." This worked a couple of times, but then she tried it one more time - "Hi Rabbi, I'm your nurse and I have your medication." My dad looked at her and said, "I'm happy for you," then turned to me and started a conversation [clarity and humor, what a treat!].

The other evening when I fist got there we went through our typical routine of "Hi Dad, it's Debby, your daughter." My Dad responded with his typical disbelief, "A neie meise" ("another [tall] tale"). A minute later he asked me where Debby was. We went through establishing my I.D. a few times, sometimes Dad looking like he understood who I was, and other times clearly being confused. I can always tell when he understands and when he's confused by the look on his face and in his eyes. When he gets overwhelmed he starts this weird fake-sounding cough. After a couple of minutes of trying to figure out who I was, he coughed a few times, then got very quiet. Suddenly he looked at me - looking like his old self for just a moment - and said, "I'm losing myself." By the time I'd said, "Oh, Dad," his eyes had clouded back over and he was back to his confused self. My dad wouldn't talk with me about his Alzheimer's. As far as I know, he didn't really talk with anyone about it. In the early stages, when I took him to the Center for Memory and Aging at UCSF every 6 months, once they'd diagnosed him with Alzheimer's Disease, he'd say, "Alzheimer's - who has Alzheimer's?" His neurologist would say to him, "Rabbi, you have Alzheimer's Disease." To which my dad would invariably reply, "What are you talking about, I don't have Alzheimer's Disease." Although about 6 years ago my dad and I were able to talk about Advance Directives before he had surgery, the Alzheimer's issue was just too tough for him, making his acknowledgement "I'm losing myself" so incredibly poignant - it made me feel both sad beyond belief, and honored that he would entrust that to me.

My dad had a brilliant mind. He was ordained as an Orthodox rabbi at a renowned seminary in Berlin when he was 22-years old - about 6 months before the Nazis expelled him from Germany to Poland. I only started reading Torah in synagogue when I was 40 - I was brought up Orthodox, and that was something just not taught to girls. When I had a question about trope (cantillation of the Torah or Prophets), I'd call my dad. As his vision got worse, he'd say, "It's too much trouble to get my Tikun and find the place under the video magnifier; you start." So, using my Tikun, I'd start chanting, and within 3 words he was chanting along with me. Even just a couple of months ago, at Avi's bar mitzvah, there he was davening (saying the prayers) and leyning (chanting the Torah reading) by heart. I'm so incredibly grateful that he was there for Avi's bar mitzvah, and that we have the great memory of him going into "rabbi mode," forgetting that he wasn't in his old shul, and telling the congregation, "You may be seated."

Rom is hanging in there. I can't even imagine what the last year + has been like for him. And now - this is when I go into I-really-couldn't-make-this-up-if-I-tried mode - we're battling over medical insurance. We have medical insurance through Rom's union, I.A.T.S.E. - I can't remember what the initials stand for. Lots of T.V. folk, based in New York. Any time Rom works a union job, the company for whom he works that job pays into his I.A.T.S.E. fund. Some of that goes into pension, some into health insurance, etc. Quarterly, we get statements that tell us how much has been paid into Rom's fund, and what amount we need to pay for health insurance. It varies greatly - some quarters Rom has worked a lot, and we pay little or nothing; some quarters Rom hasn't worked a lot, and we need to pay more. Somehow, I didn't notice that we didn't receive a statement in June - yeah, just a few distractions. Without notifying us, the union cancelled our health insurance as of June 30th. Rom found all of this out as I was getting my second chemo treatment 2 weeks ago. We got a registered letter later that day notifying us that because they hadn't received our payment, as of 6/30/06 our insurance was cancelled, but that we had 60 days to send in the paperwork for COBRA. COBRA is a federally mandated program whereby anyone who stops working for a company can continue his/her health coverage through that company for 18 months. There's only one glitch - it's A LOT more expensive .... to the tune of us having to pay 5 times as much as we did in the quarters when Rom worked the least before. We are in the process of appealing this insane decision - yeah, in the middle of cancer treatment I would knowingly NOT pay my health insurance premium. If that were the case, I think cancer would be the least of my worries. The Cancer Cent4er has been great - Rom talked with one of the financial counselors that same day this insanity began, and she told him not to worry, just keep bringing me for treatments and it would all shake out in the end. We've got a letter drafted that we'll fax to the union tomorrow. If that doesn't work we can either wait for the Board of Trustees of the Fund to meet in September and appeal to them, or get nasty and get a bad-faith attorney and sue them. There's a part of me that wants to jump to the latter right now as a way of saying to them, "How dare you put this family through one more thing?" ... to be continued.

Wednesday is chemo day again - after that only 48 more.

Hope you and yours are well and enjoying summer.

Debby

2006-07-16T22:27:00.000-07:00

Debby Visits her dad at Chaparral House and shows off her hair growing back.

2006-07-02T10:42:00.000-07:00

Good morning campers,

Okay, a quick update on the countdown - I have only 10 more radiation treatments left. The last five will be what's called the "boost", a more intense amount of radiation to a smaller field. I now have a blue target painted on the right half of my right breast. That was done by my radiation oncologist last Wednesday during my boost planning session, and it gets "updated" (re-painted) every couple of days so it doesn't fade away before I start my boost. I've asked them for other colors - one of the techs had a purple paint pen in her pocket on Friday, I asked her to use it the next time. I'm really starting to notice the fatigue from the radiation - two mornings last week I came home from radiation, got back into bed and napped for 2 hours. Anyone who knows me well knows how utterly weird that is. My only other problem from the radiation is that part of the area that gets radiated is also part of the area where I had shingles. Ouch. So, that pain hasn't gone away, though the area that hurts really badly has gotten smaller, so we've got that going for us.

I had my first dose of Herceptin on Wednesday last week, too. One down, 51 to go (I told you this was an update on the countdown). I get this stuff once a week for a year. Although I felt a little "flu-ey" Wednesday night, that was about it for side effects. Oh, and chills. Seems like every chemo messes with my body's ability to self-regulate temperature - this one, Herceptin, is known for that delightful side effect. Think how great that would be now if we still lived on Kibbutz Ketura!

Other exciting news on the homefront. ..... This just in, well, no, it was Wednesday early evening - Avi's Little League Team took the District 4 Championship in a 10 - 0 slaughter! Avi got on base every time he came up to bat, and made two incredible plays while playing 3rd base. I love to watch him play baseball - seeing the look of pure joy as he runs the bases makes my heart sing.

Speaking of heart-singing .... a number of weeks ago I got an email from the woman who coordinates the services in our synagogue. She wanted to know if I'd read Torah on a specific week. She emailed again almost immediately and asked if Avi would like to lead the Torah service that same day. I told her I'd definitely read Torah, but that I'd wait a day or two to ask Avi about leading Torah service as he was getting his braces put on that afternoon. Without going through all of the emails that went back and forth, it turns out that Avi, on his own initiative, had gone up to this woman during a kiddush after services one Shabbat and asked her to "put him in the rotation" sometime to do Torah service. It gets better. Whenever I'm going to be doing something during a Shabbat service, I write it on our big family calendar so I won't forget. The week that Avi led Torah service, I was looking at the calendar to check appointments, and noticed that Avi had written for that Saturday, "Avi - Torah Service." This is HUGE. He did a great job, and I was at least as proud of him as I was on the day of his becoming a bar mitzvah.

We all know that writing things on our calendars is a great way to remember them and not to "double book." Ah, if I could only be consistent about that these days. This afternoon we are going to a wedding. I'm actually going to be singing one of the Sheva B'rachot (the seven blessings) during the wedding ceremony. Only I never wrote the wedding on our calendar. Early last week we got a call from friends inviting us over for Sunday evening. I said sure, great, we'd be there. It suddenly hit me last night. I called and spoke with Eric. Dear friend that he is, he helped me put it in perspective, "Look, you were really smart for all of your life until chemo ...." I keep waiting for those brain cells to wake up, regenerate, whatever it is that they have to do so I can think like I used to. Reminds me of the scarecrow in the Wizard of Oz - "If I only had a brain." At least, I think it was the scarecrow. I always had a love/terror relationship with that movie when I was a kid. The wicked witch and those flying monkeys scared the whoo-ey out of me. "Oh-ee-oh" - yikes, I can still hear them singing. Much later, in the 70s, I could understand the whole story in terms of a weird acid trip - but that never totally resolved that love/terror thing.

So that "if I only had a brain" thing played out pretty ugly this week. I've been having terrible neuropathic pain from when I had shingles. As I mentioned earlier, part of where I had shingles is in the field that gets radiation 5 days a week, so it's not sitting down and shutting up. My oncologist had been putting me on stronger and stronger pain meds - first percocet, then oxycontin, and finally what's called a duragesic patch - it's a small patch you wear on your skin. It releases 50 micrograms of Fentanyl per hour for 72 hours. Pretty strong stuff. Last Sunday evening I realized that I'd been wearing my 3rd patch for 4 days instead of 3, and I wasn't in any pain. So I took off the patch and didn't put on another one. I also didn't take any oral pain medication, since I wasn't in any pain at the moment. Here's where the chemo brain stupidity part comes in .... If you think about it, my body had become addicted to having a certain level of something in it, and I suddenly cut it off cold turkey. Yup, I went through withdrawal. Except - dear chemo head - I couldn't figure out what was going on for about 4 days. Wednesday, when I got my new chemo, I also got a good dose of IV Benadryl, since Herceptin is known to cause severe allergic reactions. The benadryl first made me tired, then had me so hyped up I couldn't sit still. Rom and I paced the halls of the cancer center for about 2 hours dragging my IV pole with us. When I had my panning session for the boost radiation they had to hold me down because I couldn't stop shaking. Oh, that was after they'd already given me a bunch of Ativan when I was getting my chemo to try to stop the reaction. It was REALLY pleasant.

Thursday I finally put 2 and 2 together and came up with 14. So now I'm back to taking low doses of pain meds, which I'm back to needing now that all of the Fentanyl has left my body and I realize that I still actually DO have pain. No more stopping medications cold. That's like being a patient 101 - I just chemo-brained right past it.

Avi's going on a 2-night overnight this week with his day camp. He's not a great over-nighter, but he's convinced that he's going to be able to do this one. They're going to Santa Cruz, and I know I'm not driving down there to pick him up. Rom has two of the days off that Avi will be gone, so we may turn off the phones, close all the blinds and

Enjoy!

Debby

2006-06-21T16:54:00.000-07:00

Happy first day of summer! It's a beautiful day here in the Bay Area - perfect for the longest day of the year. School's out ... I almost feel like I did at the beginning of summer when I was a kid, when it felt like there would be days and days ahead of playing, riding bikes, exploring, picking wild blackberries, knowing it would be forever before you had to worry about school again .... okay, now I've gone overboard.

I'm feeling great, though it was a bit of a treck to get here. As a matter of fact, it started the day after I wrote my last chronicle. I have radiation Monday through Friday at 8:30 in the morning. That Tuesday after radiation I had an appointment with my oncologist. Everything is in the same building - all of the radiological stuff, one treatment room, the acupuncture room and a pheresis unit are in the basement. The first floor has the doctor's offices, the big treatment room, the places where you get blood drawn, and a lab to analyze all the samples. When I was done with radiation, I went upstairs and had my blood drawn. They used my port to draw the blood, but didn't leave the needle in, since I'm not getting chemo right now. Then I went to an exam room to wait for my doc. Lab results are usually up within 15 - 30 minutes. We were just past the half hour mark when I started to get dizzy and nauseated. I'd just stuck my head between my knees when my doc walked into the room. I jumped out of my chair and ran to the little sink in the room and started vomiting. She ran to the phone and asked someone to bring in an emesis basin. I assumed it would be one of those kidney-shaped plastic things that they give you in the hospital. As I was leaning over the sink, a hand reached in with what looked like a small paper desert dish that had blue saran wrap on it. I lifted my head, looked at the nurse and said, "Is this some kind of a joke?" She grabbed the end of the blue "saran wrap" and pulled down - voila - creating what my friend Andrea aptly described as "a barf tube." [Okay, if I'm giving you too much information I apologize.] You put your face in it and have at it ... it really does hold much more and work much better than those kidney-shaped things.

I ended up spending he rest of that day and half the next in one of the treatment rooms (where they had to re-access my port) getting IV fluids, electrolytes (some of mine were way off), anti-emetics and some steroids, just to round out the cocktail. We're not really sure what was going on. I had some kind of infection - along with a wicked cough. It could be the radiation, my doc says, since I've been so sensitive to everything else they've given me. It could have been the combo of meds I was on to try to deal with the "herpetic neuropathic pain" - the pain left over from the shingles. Who knows. But we changed a whole bunch of things around, and I'm doing a whole lot better. I take a little something every morning an hour before radiation, and I don't have nausea anymore. We switched just about everything we were doing for the pain, and it's working. Sometimes I look at the number of pills I take and I wonder how I'm walking, talking and driving - but it's all good. So good, as a matter of fact, that next week I get to start Herceptin.

I'm finding that the negative side-effects from radiation, like everything else in this cancer treatment array, are cumulative. I start the week with quite a bit of energy - by Thursday and Friday, I'm pretty zapped. Last Friday after radiation I went to my office for about an hour and a half. Then I went home and spent almost the rest of the day in bed; not really sleeping, but not really awake. Having the weekend off, though, was great, because I really had quite a bit of energy on Monday. I'm assuming it will sort of stay that way - always feeling more energized on Mondays - though I understand that as treatment progresses, it all becomes relative. Next Monday I won't have quite as much energy as this Monday, and so on. No big deal - 4 more weeks and I'll be done with radiation. Then we can start the Herceptin count-down - 52 weeks. My plan, once I'm over the fatigue of radiation, is to go back to work and just take off my Herceptin days.

Avi and Rom are good. Rom finally got over what ever virus decided to camp out in his body, and he's working a lot. He actually has the day off tomorrow, and I'm going to try to remember to get him to take a picture of my growing-in hair and put it on the blog. Avi has the week off this week. He's at baseball practice right now, gearing up for the TOC (Tournament of Champions).

Within the next couple of weeks I'm going to visit with an old friend from high school who found me by searching on the internet. We haven't seen each other in over 35 years, and I can't even begin to tell you how weird it feels saying that. I'm also going to visit with a friend from college, but even though she lives in Pennsylvania, I get to see her a couple of times a year because some of her kids live here in the Bay Area.

Things here are good. I hope they are for you, too.

Love,

Debby

2006-06-12T19:35:00.000-07:00

Good evening campers (well, summer's almost here),

It's been almost a month since I last wrote, and I was starting to get some emails and phone calls wanting to make sure we're all okay.

Hanging in there, for sure. The last time I wrote I think I was waiting to get sick from my last infusion of Taxol. Wow, did that one hit. Just so I wouldn't think I was getting off easy, I had a 5 or 6 hour return to the days of my first round of chemo. You know, a jaunt down memory lane, crawling from the bed to the bathroom to pray at that porcelain altar. We're glad THAT's over.

I started radiation on May 31st, and so far, so good. I get a little tired out, but I'm running around like a "vilde chaya" (for those of you not Yiddishly-inclined, that literally means "wild animal," often, though, saved to describe the behavior of certain types of recalcitrant children). We moved my dad to the skilled nursing facility in Berkeley, and a lot of the being up and about has to do with him. I visit him at least once a day (the facility is literally a 10-minute drive from our house). Until he fell, Dad dressed every day in a suit, button-down shirt and a tie. Needless to say, those clothes aren't going to fly in his present setting. My dad can no longer walk, and needs to be lifted from his bed to his wheelchair. The new wardrobe is sport-shop couture - 3-button polo shirts, elastic-waist sweat pants, and zippered sweat shirts. The only problem is that it's spring, almost summer, so other than the polo shirts, which I can find just about anywhere, I've been running all over hells half acre trying to find the sweat pants and sweat shirts. Oh, and when he moved there he weighed all of 90 lbs. - up to a whopping 98 lbs. as of the end of last week. Men's size small or kid's extra large are the sizes that work, and I have more luck finding the kids extra large!

The other thing that takes time and energy is cooking for him - the facility is not a Jewish one, but is working with us to honor Dad's lifelong commitment to Kashrut. He gets a dairy meal for breakfast, a vegetarian meal for dinner, and for lunch is served a kosher meat meal that I provide. I try to cook once a week, and they've been great about taking the food, putting it in the freezer, and then "nuking" him a kosher lunch every day. We're trying to figure out a solution that doesn't involve me cooking, but so far haven't come up with anything. Anyway, to finish up about my dad - he seems happy and comfortable. He knows me sometimes, often times not, and that can fluctuate from minute to minute. My favorite is when he calls me "Yankel," Yiddish for "Jack" (my older brother). I'm starting to grow my hair back, and now have a head of short white hair. Although my brother's hair isn't white, my guess is that my dad can't remember who I am, but remembers that there's some family connection. With his limited vision he can't see my features, and with the very short hair, assumes it's my brother. That's the story I'm going with.

So, hair. Yeah, definitely coming back. I have a couple of eyelashes, and my eyebrows are starting to come in, too. So are those delightful hairs that women of a certain age have to start plucking off their chins. See, there WAS an upside to chemo ... I didn't have to deal with those suckers. Rom's feeling really terrible today - some upper respiratory coughing, sneezing, stuffed-up nose "I feel like shit" kinda thing. As soon as he feels better I'll get him to take a photo or two of me and put them on the blog [no chin-hair close ups]. The address for that, if you've forgotten, is www.romdeb.blogspot.com

Avi, who finishes school for the year at the end of this week, has had an incredible baseball season. His team took first place in their age group (13 and 14 year olds) in Albany, and is now headed to the District 4 Tournament of Champions. Please don't ask me what District 4 is. I know it covers a geographic area, I just don't know who's in it. Albany is hosting the TOC this year, so these games get played on our home field. If by some chance they take the District, then they move on to the Regional. Avi, of course, is already dreaming about the Little League World Series ....

The quick what's left run-down: The worst part of treatment is done with, though I still have a ways to go time-wise. I'll have radiation treatments through July 18th. As soon as my oncologist thinks I'm in little enough pain left over from the shingles, I'll get to start my final chemo - Herceptin, that wonderful little monoclonal antibody that's what's called a "targeted therapy" because it was developed specifically to deal with the type of tumor that I had. Once I start it I can begin my weekly countdown for a year. If all is still going well then, I'll be put on an oral med, Arimidex (that's the Tamoxifen-like med for post-menopausal women) for 5 years. As soon after I'm done with Herceptin that my doc feels it's okay to have my port removed, I'll have that minor surgery, and then I think we'll throw a party.

Hope you all are doing well and looking forward to some fun over the summer.

Love,

Debby

Getting my last of the yucky chemos!

2006-05-17T09:11:00.000-07:00

Last of the yucky chemos, made better visiting with Moira, the Cancer Center Chaplain, who happens to be Jewish and very Zen. She also has a great sense of humor, which works well for me - since, you know, too much Zen and I start to turn everything off.

Waiting for my last chemo in the waiting room.

2006-05-17T09:09:00.000-07:00

Rom and Debby's Blog

2006-05-17T07:50:00.000-07:00

Good morning baseball fans (and the rest of you, too),

Hope this finds all of you well and in good spirits.

I had my last Taxol treatment yesterday - yeah, the end of the yucky chemos! I'm still racing from the IV steroids I get along with the chemo, so here I am, just after 7:00 a.m. posting a chronicle. Rom took some pictures yesterday for my last of the yucky chemos, and he'll post them on the blog when he gets back later this morning.

It's also a special morning because Avi, who became bar mitzvah on April 1st, got up this morning to go to morning minyan (Rom took him), to be there when his buddy Eli puts on tefilin for the first time prior to his bar mitzvah, which will be this coming Shabbat. What a difference a bar mitzvah makes in a young man! Okay, well, it might also have something to do with finding a good medication mix - but I'm sure the meds are only a part of it. We talked with Avi about how cool it would be if he started a tradition at our shul, where kids don't normally come to morning minyan, that the kids from an Amitim class (that's our bar/bat mitzvah class) start coming to morning minyan at least when one of them is coming to put on tefilin for the first time. Avi is continuing to amaze us from time to time - it's wonderful, and we're very proud of him when he does things like this, and we're sure to let him know that.

I have about a day and a half before I'll start getting sick from this last chemo, and I've made a list of things I want to try to accomplish while I'm feeling good (remember, it's all relative here). My dad is still at the hospital acute skilled nursing facility (snf). We haven't heard from the place in Berkeley to where we're planning on moving him. I've spoken with their admissions person, and on last Friday met with their executive director. Both of them have assured me that my dad will have the next available place ... this is difficult, because if you think about it, it means we're most probably waiting for someone to die to make that "next available place." That's got to be the reality most of the time at a snf.

Dad has come back physically quite well from the stroke that he had two days after the surgery for his broken hip, but he's been much more effected by it cognitively - the stroke significantly increased his dementia. Because of that, he doesn't understand why he needs to push himself with physical therapy, and at times doesn't even understand mechanically what he needs to do in his exercises. I was with him on Monday an tried to help him with his exercises, which he does while lying down in bed. The idea of "point your toes forward, then pull them back and point them at the ceiling" just didn't make any sense to him - he couldn't understand what I was asking him to do. Because of the increased dementia, dad is still only in bed - once a day a "lift team" - two big, burly and very nice guys - come and lift dad out of bed and put him in a wheelchair. An hour later, they come back and put him back into bed. Because Dad's in an acute care facility, the physical therapists can no longer work with him, because he's not making any progress. Technically, he shouldn't even still be in that acute snf, but they've agreed to let him stay there until the bed opens up in Berkeley. All of this has to do with the Medicare guidelines - that is, what they'll pay for. Anyway, we're hoping that once we get dad into the long-term snf, we'll be able to get physical therapist who will continue to work with Dad, and maybe at least get him to the point where he can get himself out of bed and into a wheelchair, and then the reverse. Of course we'd love it if he could learn to walk with a walker, but that's probably a true pipe dream. The increase in Dad's dementia also means that he really doesn't recognize us anymore - I can tell him who I am, sometimes he's able to understand what that means, a lot of times not. When he does understand, he can only hold that thought for a minute or two at the most. This is the hard part, because Dad was always so amazingly sharp, a real scholar in some ways, and an incredible jokester. Almost all of that's gone now, though he will occasionally, and with no apparent external reason, break into singing - usually something from the liturgy, though sometimes he'll regale us with Yiddish songs from his youth. His room is right across from the nurses' station, and when he goes into singing, many of the nurses will gather in the station and listen.

This is the part of Alzheimer's Disease that appears to be harder for family and friends than for the patient, but no one really knows. It's certainly difficult for me when he doesn't know me, when I try to talk with him about something that I think he remembers, such as the parsha this week, or to watch the losing of his dignity. The flip side is that most of the time that he's awake (and he sleeps A LOT) he is still in an apparent good mood. That's the most important thing for me at this stage, that he be if not happy, then at least content.

How do you segue out of that?

I have one more "chemo sick" to look forward to. It's a bit rough, because this chemo sick pretty much just involves intense pain essentially all over my body. Coupled with the pain I'm still having from the shingles it's a true "mechaya." But after a couple of days of the chemo pain's gone, and I think I've figured out a way to more or less stay on top of the neuropathic pain from he shingles. It's still there - by "staying on top" of it, I mean remembering to take meds so that I can stay in front of the pain, thereby keeping it down to a dull roar.

Anyway, in a couple of weeks I think I'm going to have an "end of yucky chemo" party - low key, maybe just the women who were here for my head shaving. Throw Rom and Avi out for the evening, move the dining room table sideways, have some food, some wine, some music and some dancing. Sounds like a plan to me.

Hope the ups and downs in your lives are balancing each other out. For those of you old enough to remember, and who visited Disneyland in that era, this is definitely an "E Ticket" ride.

Enjoy the spring!

Love, Debby

Debby in her "Isolation Chamber"

2006-05-07T21:51:00.000-07:00

Rom and Debby's Blog

2006-05-07T21:00:00.000-07:00

Hello everyone,

Let me start out by saying that I couldn't possibly make this stuff up. And I quit asking a long time ago who I might have pissed off; anyway, it's not about me.

Last we heard from our hapless heroine, chemo had been stopped because she'd come down with shingles....

The oral anti-viral medication I'd been prescribed didn't work, and my original patch of shingles, about the size of a sliver dollar on my right torso, managed to spread like a sideways "c" around my rib cage. Felt real good, too. I was scheduled to see my doc on Tuesday, April 25th, a week after my shingles had been diagnosed.

That morning our phone rang at 6:00 - it was a nurse from where my father lives, calling to tell me that they'd found him on his bathroom floor, that he'd apparently fallen, and that he said it hurt when they tried to move him. They'd called an ambulance and were sending him to the emergency room - would I please meet them there?

As someone with an active case of shingles, I'm about the LAST person anyone wants in an ER, so Rom rolled out of bed and headed into San Francisco. He called home shortly after he got there to say that they were sending Dad to x-ray, thinking that he might have broken his hip. To make a long story short, he did - and had surgery that afternoon to put in a pin, a plate and some screws. I'd called my sister, Judi, early in the morning, and she headed to the hospital from where she lives, east of Sacramento. With a quick trip home Tuesday night, Judi was back here the next day, and then stayed till Friday to be with our dad.

Meanwhile, back at the ranch ....

I showed up for the appointment with my oncologist, but had to wait out in the hall away from the waiting room in the Cancer Center so that I wouldn't expose any other cancer patients to my shingles. After being snuck in the back way and put in a room my doc came in to see me, took one look at the spread of shingles, and announced that I needed to be in the hospital on IV anti-viral meds. I explained what was going on with my father - at that point we weren't yet sure if he was going to have surgery, and my doc called for one of the social workers, then set it up so that I could use the phone in the exam room as my "office" to make arrangements to have Avi covered when he got out of school, to make and receive calls from Rom and my sister to find out what was happening with my dad, and to figure out anything else that needed to be arranged.

When I got to the hospital, I found out that I was being put on the oncology ward - but in isolation, since I was still actively contagious. I was in a room with two sets of doors, and a little outer room where staff could wash up and gown - this was for the protection of the other patients. From Tuesday till Friday I was in that room - certainly not allowed to even go into the little anteroom outside my door. Rom spent those days shuttling between the two hospitals, home and work. It was crazy, to say the very least.

Dad came through the surgery on Tuesday afternoon fine, but on Thursday morning he had a stroke. That first day his left side was paralyzed (he broke his right hip). Amazingly, because he really does seem like the Eveready Bunny, he slowly started getting some movement back on his left side. I was released from the hospital on Friday, and declared no longer contagious by the infectious disease doc, and with the shingles halted in their tracks by the IV meds. Unfortunately, I still have what's called "neuropathic pain" - the right side of my torso pretty much feels like it's on fire and that someone used me as a punching bag. They (that's the docs) can't tell me how long this will last. It often goes away within a couple of weeks; it's been known to last a couple of years. I'm petitioning for the former, but don't know if anyone's listening.

I've been spending most of every day since I got out of the hospital with my dad. Last Wednesday he was transferred from the acute hospital to a rehab/skilled nursing facility run by the hospital. Unfortunately, probably because of his Alzheimer's Disease, he's not benefiting from rehab as much as anyone would wish. It's very possible that sometime this week we'll need to move him to a long-term skilled nursing situation. The fall and the stroke have increased his dementia - at times he's been pretty clear, but there have been more times when he's been very confused.

It's been a strange and tough time. It will probably get stranger and tougher, but we're hanging in there. My dad is 89 years old and has had an amazing life. We don't know how/if he's going to recover, or what that will look like. We're struggling with all kinds of decisions and feelings, wanting to do what's best for Dad every step of the way.

This past Thursday I saw one of the other docs at the Cancer Center (my doc was on vacation last week). I've been declared fit to resume chemo this Tuesday. I only have two Taxol treatments left, so getting them finally done with will be good. I'm resuming with acupuncture this Thursday, and hoping that the acupuncturist has some tricks up her sleeve to help with the neuropathic pain.

So, that's what the past couple of weeks have been like. Not my usual upbeat missive, but as I said before, we're hanging in there.

You do the same.

~ Debby

Rom and Debby's Blog

2006-04-19T09:53:00.000-07:00

Mo'adim l'simcha [for those of you celebrating Pesach),

Just a short update because I'm bummed. I was supposed to have my 11th of 12 Taxol treatments today, but it got canceled because I've got shingles. For those of you unfamiliar, shingles, or herpes zoster, is like the gift that keeps on giving. If you had chicken pox as a child, the herpes virus [which is what causes chicken pox] never really goes away - it just lies dormant in your nerve endings until something causes it to rear its rosy little head[s]. Undergoing chemotherapy has caused me to become immuno-suppressed enough for this delightful new experience. Unlike chicken pox which itch, shingles hurt. .... a lot. I'm lucky in that the shingles just appeared last night: the best-outcome protocol for making the shingles not last for a really long time is to start on anti-viral medication within 72 hours of the outbreak. So, I've got that going for me. But it means that I won't be getting chemo this week or next week; instead, I'll get my last two treatments in this round during the first 2 weeks of May.

Hey, you should see how the medical folks in a cancer center react when they realize you've got shingles. Talk about being a pariah! Once they figured out what was going on, Rom and I pretty much had to stay in the exam room where I saw my doc. My blood work also showed that my white counts were crashing, so even though I didn't get chemo, my doc ordered injections of neupogen today and tomorrow. But I can't go to the injection room to get those shots, because they don't want me anywhere near any other chemo patients, who are also immuno-suppressed, so that I won't give them shingles. Oh, did I forget to tell you that I'm extremely contagious? Yeah, to anyone who hasn't had chicken pox, or to folks who've had the chicken pox and are now immuno-suppressed. They had to order up a special cart to come and clean the exam room I was in. I wanted to wait and see if someone came in a HazMat suit, but they ushered us out of there as quickly as they could. Tomorrow, since I need to go back for another injection, I need to call into the injection room from the front of the hospital. The nurse who does injections will come and bring me in the back way, put me in an exam room, give me my injection, shuffle me out the back way again, then call in the folks with the special cleaning cart one more time.

Chemotherapy - it doesn't just cure cancer, it's an adventure!

For those of you celebrating, enjoy the rest of Pesach.

~ Debby

2006-04-10T12:51:00.000-07:00

Rom and Debby's Blog

2006-04-10T12:40:00.000-07:00

Hello everyone,

I'm still riding the high of two incredible weekends in a row - much more fun to write about than yucky chemo.

The first weekend - March 31st, April 1st and 2nd - was the weekend of Avi's becoming a bar mitzvah. I know I wrote before that I was getting a chemo break that week - that helped out immeasurably. Though the side effects from the chemo are cumulative, and though I wasn't feeling 100% going into the weekend, the adrenalin, the joy, love and pride, as well as support and love from friends and family - al carried me through.

Avi simply blew Rom and me away. Shortly after I was diagnosed, Rom, Avi and I met with our rabbi and the director of education at our shul, along with the person who took over tutoring Avi, to come up with reasonable accommodations and expectations for his participation in services. Usually in our shul, a bar- or bat-mitzvah begins by leading the Torah service. He or she then leyns at least the maftir, sometimes more. He or she chants the haftarah, finishes the Torah service, gives the drash (sermon, for lack of a better word) and then leads musaf. In our meeting we decided that Avi wouldn't lead musaf, would only chant part of his very long haftarah portion, and we hoped that he'd learn his maftir. When we met again just a few weeks before his bar mitzvah it looked like he might not be able to pull off leading all of the parts of the service during which the Torah is returned to the ark. Avi ended up learning his maftir, learning the parts of the service we were worried about, and though when I practiced with him (oy, the pain of getting him to do that!), I often asked him to sing louder, when he got up to the bimah he took command and people could actually hear him. He ad-libbed a joke or two into his drash - appropriately! - and he "stuck to his guns" and finished the service with his classmates singing Adon Olam to the tune of "Rock Around the Clock" (which they had been taught in kids' services in Hebrew School). We were thinking that either Rom or I would make kiddush at the kiddush/lunch after services, except Avi and his tutor surprised us and he learned the shortened Shabbat kiddush that we do at our shul. The party that night was a hoot - the kids danced up a storm, and the dj and his crew even played a few songs that we "old folks" wanted to dance to.

We had help from lots of friends who baked goodies that we served at the kiddush/lunch and at the party in the evening. Friends bought and decorated small plants to put on the tables, got and filled balloons for the party - it was an amazing "event," that we were able to pull together with the help of so many of our friends. I still get shivers when I see Avi reading his maftir from the Torah in my mind's eye.

The following Tuesday (almost a week ago) I went back on chemo. That was the 9th of 12 - so I only had 3 more left (redundant of me, even for the math-challenged). My oncologist was thrilled to hear about how well Avi's bar mitzvah had gone, and even cooperative when I dropped the next bombshell on her. Through my work, I created a social/educational group for Jewish adults with mild to moderate developmental disabilities. All of my clients have some type of cognitive impairment; some also are dealing with mild to moderate forms of autism; and a few have some medical issues thrown in just to keep things interesting. A few years ago I found out that once a year there is a weekend Shabbaton at the Brandeis-Bardin Institute in Southern California for Jewish adults with developmental disabilities. It took me two years, but members of my group (which is called Chaverim, which means "friends") finally decided last summer that they were going to save money so that they could go on this weekend. Little did I know then that I was going to be diagnosed with cancer; nor did I know that this would happen the weekend before Pesach. I have 20 members in my Chaverim group; eight of them went to this weekend, along with myself and another "staff" person. There were others with disabilities from Los Angeles, the San Fernando Valley and the San Jose area. There were actually very few "staff" people because there are so many people who have been coming to this weekend for years as volunteers. My other staff person is a volunteer. But the folks who come to this weekend .... many of them started out as counselors at a summer camp at Brandeis-Bardin. They have since grown into adulthood, gotten married, had kids - and come up as families every year to help out at this weekend. It was so seamless, so accepting, so warm - not to mention that the place, sitting on 6,000 acres in a valley is absolutely beautiful. We had Kabbalat Shabbat services, a Friday night walk around that part of the camp, seeing stars and listening to frogs and crickets. On Shabbat morning we had services, followed by a kiddush and Israeli dancing. After lunch people had free time; then in the afternoon people could choose one of 3 chugim (activities) - drama, singing or dancing. Later in the day, after dinner, we had a melaveh malkah - which literally means "escorting the queen." A melaveh malkah is a way to hang on to the sweetness of Shabbat before it gets dark and Shabbat ends. Each of the 3 groups proudly performed for the rest of the community - a dance, a skit, a couple of songs. Others, from the huge corps of volunteers, interspersed with songs and little comedy skits. Saturday night we made havdalah under the stars, then went into the dining room for a disco dance dj'ed by some of the group members from L.A.

It's hard to describe how inspiring the whole weekend was. The 8 members of my Chaverim group talked excitedly on our shuttle to the airport and then on our flight back about what a great time they had being in a Jewish atmosphere. They are certain that they'll be able to convince the other members of our group to come along with them when they go back to Brandeis-Bardin next year. My only complaint about the weekend is its timing - the weekend before Pesach? But Rom and I will get the house and kitchen kashered somehow.

It's back to chemo tomorrow. Thursday night we're going to have a chevre seder here in our house. Bonne and Judy have already volunteered to come over and help cook. It'll be a simple meal, but it will be great. Just as with Avi's bar mitzvah Shabbat and the Chaverim weekend (not to mention the big "c")- I've been hanging on to an attitude that it will all work out. So far it all has, and I know it'll continue to do that.

When we post this on the blog we'll put some photos up from Avi's bar mitzvah .... no, not from Shabbat. We have some from the Thursday before he became bar mitzvah, when we all went to morning minyan and he put on tefillin for the first time. I think Rom's got some shots from the party on Saturday night, too.

Chag Pesach Kasher V'Same'ach!

Debby

Picture from Purim Dance

2006-03-14T21:49:00.001-08:00

Well, Art Braufman from our shul sent us this picture from the party... at least someone was thinking!!
Debby's talking to Jerry Derblich (owner of Afikomin Bookstore) and Michelle Wolfson (our Education Director) is behind him. Rom is holding the napkin with the wrong date on it, for some unknown reason!

2006-03-14T08:43:00.000-08:00

Hi everyone,

I realize it's been a while since I last sent out an update - and, to borrow an old line from Robin Williams, I just knew you were sitting out there with worms on your tongues (think "baited breath").

We're all hanging in there, having now made it to the halfway point in this round of chemotherapy. Tomorrow I'll get my 7th of 12 treatments. Counting the week off at the end of March for Avi's bar mitzvah, I'll be officially done with this round at the end of April. This round is definitely easier than the first, though it ain't no picnic (do I qualify for an abatement of grammatical rules with chemo-brain?). At least there's a somewhat predictable pattern. I get chemo every Tuesday, and since my body has decided that it's very sensitive to the steroids that I get along with my chemo, and not at all sensitive to any of the sleeping pills I've tried, we can pretty much predict that I'll be up till sometime between 3 and 4 on Wednesday morning. Unfortunately, I don't sleep in, either, so I'm usually up by 7, bleary-eyed on the one hand, and still wired for sound from the steroids on the other.

I usually wait to get chemo-sick till sometime on Thursday. Very little nausea, which is good. People often describe this as feeling like you've been hit by a truck. Since I've never been hit by a truck, my best description is think of how you feel when you're coming down with the flu - body aches, headache, and just not feeling well. Now multiply that by as much as you can. Now you're getting close. But, I've found the combination that makes those days tolerable - one of the pills my doc gave me for pain, plus a toke or two of medical marijuana, and at least I can talk to folks without snapping their heads off (Avi and Rom are especially appreciative of this). This'll get interesting on Friday, when I have a meeting for work. I've started going in to my office a couple of hours a week just to do minimal "maintenance" to try and keep a few programs up and running. It's good to be doing something and nice to see the folks at the agency where I work.

There are other side effects, most of them rating somewhere between annoying and uncomfortable. Here's a totally weird one for you. My fingernails are coming off, starting at the cuticles and working up toward the tips. Right now I've got four nails taped down - they get caught on stuff and pull off if you don't tape them down - I learned that one the hard way. It didn't even all start at once. It began on my thumbs and is working its way out to my pinkies. I'm wondering now when my toes will start. That'll be it then, though. Hair, eyebrows and lashes and nails. Maybe we should start a pool for which will start to grow back first!

Okay - fun stuff. We got all dolled-up last night (Rom in a tux, me in a long dress [okay, I also went bald]), and went to a fun fundraiser at our synagogue. Earlier in the day I told myself to remember to have Avi take a picture of us. Would have been a good one for the blog. I'm sure you caught the "would have been" - right, chemo brain forgot. Ah well. We had a great time, even danced some, helped raise money for our shul - what could be bad? Avi got to hang out with his cousin Neil, go to a movie - what could be bad?

Avi's bar mitzvah is in 3 weeks. How did that happen? Somehow we're all going to be ready and pull this off. Actually, this past Shabbat after services Avi did a run through of his maftir (the part of the Torah reading that he's going to do) - using the Torah and with his tutor. She said he did really well - and now, like every nervous pre- bar or bat mitzvah parent, Rom and I just hope that the stars will align on April 1st and that his bar mitzvah will be a positive experience for him.

The weekend after Avi's bar mitzvah I'm heading to the Brandeis-Bardin Institute in Southern California for a weekend for Jewish adults with developmental disabilities. One of the programs that I run is a Jewish social/educational group for adults with developmental disabilities. There are 21 people in the group, and 9 of them are going to participate in the weekend program. This will be the first time our group's gone to this Shabbat/weekend program, and it's really exciting. The timing isn't the greatest, but we'll just work around that. I've been talking with my group about this weekend for a couple of years, and about a year ago, they decided that they wanted to participate this year. Now that I've gotten their buy-in it feels really important to do this. Of course, we didn't know till a few months ago (when they set the date for the program) that it would turn out the week after Avi's bar mitzvah .... and the weekend before the beginning of Pesach. I figure - jump through as many hoops as we can now, then maybe someone will stop throwing them at us.

Be happy, it's Purim!

Chag Same'ach,

Debby

Rom and Debby's Blog

2006-03-13T14:51:00.001-08:00

I realize it's been a while since I last sent out an update - and, to borrow an old line from Robin Williams, I just knew you were sitting out there with worms on your tongues (think "baited breath").

We're all hanging in there, having now made it to the halfway point in this round of chemotherapy. Tomorrow I'll get my 7th of 12 treatments. Counting the week off at the end of March for Avi's bar mitzvah, I'll be officially done with this round at the end of April. This round is definitely easier than the first, though it ain't no picnic (do I qualify for an abatement of grammatical rules with chemo-brain?). At least there's a somewhat predictable pattern. I get chemo every Tuesday, and since my body has decided that it's very sensitive to the steroids that I get along with my chemo, and not at all sensitive to any of the sleeping pills I've tried, we can pretty much predict that I'll be up till sometime between 3 and 4 on Wednesday morning. Unfortunately, I don't sleep in, either, so I'm usually up by 7, bleary-eyed on the one hand, and still wired for sound from the steroids on the other.

I usually wait to get chemo-sick till sometime on Thursday. Very little nausea, which is good. People often describe this as feeling like you've been hit by a truck. Since I've never been hit by a truck, my best description is think of how you feel when you're coming down with the flu - body aches, headache, and just not feeling well. Now multiply that by as much as you can. Now you're getting close. But, I've found the combination that makes those days tolerable - one of the pills my doc gave me for pain, plus a toke or two of medical marijuana, and at least I can talk to folks without snapping their heads off (Avi and Rom are especially appreciative of this). This'll get interesting on Friday, when I have a meeting for work. I've started going in to my office a couple of hours a week just to do minimal "maintenance" to try and keep a few programs up and running. It's good to be doing something and nice to see the folks at the agency where I work.

There are other side effects, most of them rating somewhere between annoying and uncomfortable. Here's a totally weird one for you. My fingernails are coming off, starting at the cuticles and working up toward the tips. Right now I've got four nails taped down - they get caught on stuff and pull off if you don't tape them down - I learned that one the hard way. It didn't even all start at once. It began on my thumbs and is working its way out to my pinkies. I'm wondering now when my toes will start. That'll be it then, though. Hair, eyebrows and lashes and nails. Maybe we should start a pool for which will start to grow back first!

Okay - fun stuff. We got all dolled-up last night (Rom in a tux, me in a long dress [okay, I also went bald]), and went to a fun fundraiser at our synagogue. Earlier in the day I told myself to remember to have Avi take a picture of us. Would have been a good one for the blog. I'm sure you caught the "would have been" - right, chemo brain forgot. Ah well. We had a great time, even danced some, helped raise money for our shul - what could be bad? Avi got to hang out with his cousin Neil, go to a movie - what could be bad?

Avi's bar mitzvah is in 3 weeks. How did that happen? Somehow we're all going to be ready and pull this off. Actually, this past Shabbat after services Avi did a run through of his maftir (the part of the Torah reading that he's going to do) - using the Torah and with his tutor. She said he did really well - and now, like every nervous pre- bar or bat mitzvah parent, Rom and I just hope that the stars will align on April 1st and that his bar mitzvah will be a positive experience for him.

The weekend after Avi's bar mitzvah I'm heading to the Brandeis-Bardin Institute in Southern California for a weekend for Jewish adults with developmental disabilities. One of the programs that I run is a Jewish social/educational group for adults with developmental disabilities. There are 21 people in the group, and 9 of them are going to participate in the weekend program. This will be the first time our group's gone to this Shabbat/weekend program, and it's really exciting. The timing isn't the greatest, but we'll just work around that. I've been talking with my group about this weekend for a couple of years, and about a year ago, they decided that they wanted to participate this year. Now that I've gotten their buy-in it feels really important to do this. Of course, we didn't know till a few months ago (when they set the date for the program) that it would turn out the week after Avi's bar mitzvah .... and the weekend before the beginning of Pesach. I figure - jump through as many hoops as we can now, then maybe someone will stop throwing them at us.

Be happy, it's Purim!

Chag Same'ach,

Debby

Rom and Debby's Blog

2006-03-13T14:51:00.000-08:00

Rom and Debby's Blog

2006-02-15T09:47:00.000-08:00

Good morning, or Erev Tov, depending on where you are in the world (and when you open this email or see this on the blog),

So I usually read to Avi as part of his bedtime ritual. Monday night Avi got into bed and I lay down next to him to start reading to him. He looked at me and said, "Ima, you have about 3 eyelashes left on each of your eyes, and your eyebrows are almost gone." I reminded him that we knew this was going to happen as one of the side effects of the chemo, and that they will grow back when I'm done with chemo; and reminded him that all of the side effects that I feel and that we see mean that the chemo is working hard to fight the cancer. Avi was quiet for a few seconds, then asked, "What about the hair in your nose? Are you losing it?" When I told him that I wasn't sure, he asked, "Well, can I stick my finger in your nose and check?" -- What else would an almost 13-year old boy think of?

I had my 3rd of 12 treatments of Taxol yesterday morning. It continues to be much easier than the A-C was, but I'm starting to feel crummy sooner. By yesterday late afternoon I was already feeling "chemo-sick," but I woke up this morning feeling pretty well. Which is a good thing, because Rom woke up in the middle of the night puking his guts out from what appears to be some type of stomach flu wending its way through the folks with whom he works. Lucky for us I have all KINDS of anti-emetics (anti-nausea/anti-vomiting) meds, and we found something that worked about 3:00 this morning. At one point this morning Rom said something about not believing that this is what I'd been going through every couple of weeks with the last round of chemo - but I never really had it that bad with the vomiting, only the days and days of nausea. Okay, we're heading into that too much information realm.

Taxol has its own set of side effects - of course I won't grow any hair back till after it's done. I get some nausea, but not as bad as A-C. My counts have started to drop, so now I'm getting injections, some twice a week, some every 3 weeks, to try to keep them from dropping too low. Taxol resembles A-C in that it effects fast-growing cells in your body - this includes bone marrow, mucous membranes like the lining of your mouth, nose, esophagus, etc. - the good news is that all of this is not as bad as the A-C. I also feel "chemo-sick" a hard condition to describe - including cognitive implications ( I feel way "dummed-down" for a few days), body aches, and feeling like I want to jump out of my skin. Taxol actually causes more body aches than the A-C did - making me feel for a few days like I've come down with a bad flu. The other hallmark of Taxol is neuropathy in hands and feet - right now I've got tingling in my hands and feet, but haven't gotten to the point that I'm tripping over my own feet any more than I usually do (when we were kids my older brother told our parents often that they should have named me "Grace"), and I haven't started dropping things. Hopefully, none of those will happen.

While I was getting treatment yesterday I checked with my doc and she agreed that I could take a chemo break the week of Avi's bar mitzvah - his bar mitzvah will be April 1st, so no chemo for me the last week in March. It will be nice going into that simcha feeling well and strong.

I've recently started mentoring a neighbor through this process. Her breast cancer was discovered while I was toward the end of my A-C. She started her chemo yesterday morning; and as it turned out, we both had appointments to be at the Cancer Center at 9. I've been talking with her a lot the past couple of weeks about what to expect, the fact that each of us reacts to chemo differently, and trying to help her find the perspective that early detection, relatively small tumor size, and being post-menopausal are all factors in our favor for survival. I think she's coming round.

I'm also going to start trying to work a couple of half-days a week - I'm a one-woman-show in my job at Jewish Family & Children's Services of the East Bay, so when I'm not there, nothing really gets done. It will be good for me, now that I have a some days when I'm not sick and I have a little strength, to be able to get back out there and at least try to do some good.

Hope all of you are well and happy. For those of you back east -- sorry about that nor'easter - this past week we've been sitting out in our back yard in about 70 degree weather. If it'll make you feel any better - the winds picked up over night, it was cooler this morning, and a storm is coming in that will bring rain most of the weekend and drop the snow level to 2000 feet. I get it that 2000 feet means bupkas to those of you shoveling out your driveways on a daily basis.

Hey, go have some fun.

- Debby

Rom and Debby's Blog

2006-02-01T08:13:00.000-08:00

Good morning everyone (well, except for those of you in Israel - Erev Tov),

So, here I am, the morning after my first infusion of my new chemo, and still up and running. But let me back track for a minute.

My last round of A-C chemo made me really sick, as they told me it likely would. I spent 3 days back in the treatment room at Herrick Hospital (where the Cancer Center is), getting IV antibiotics, fluids, etc. When they did my blood work on Thursday of that week, they discovered that - and here it's open to interpretation - my red counts were getting jealous of all the attention my white counts were getting and so decided to act up; when I said my white counts had gone south, they really had, and were living it up on a nice beach in Cabo San Lucas - the reds heard about it and decided to join them [my personal favorite]; or the chemo did such a number on my bone marrow that red cell production, platelets, etc. took a hit as well [this is the one my doc is going with]. So, on Friday of that week I got two units of blood.

WOW - I woke up Sunday morning feeling a lot like my pre-cancer self - made pancakes for breakfast, helped Avi straighten out his room (hey, the kid's almost 13 - it's amazing what they can store under beds, in nooks and crannies, and piled into corners and closets). After a short rest, I even made dinner that night. And the energy lasted. I took my doc's advice not to do too much (which I did in the excitement of feeling so good that Sunday), but still getting out there and doing a few things. I've been able to see my dad quite a bit - he lives on the Alzheimer's Unit of a Jewish assisted living facility in San Francisco. Since my brother lives in B'nai B'rak, and my two sisters each live a drive of about 2 1/2 hours from the Bay Area, the daily or weekly care of our dad falls to me. Needless to say, that wasn't happening while I was in the throes of A-C. But I got in to see him twice last week, which was really good. Once to take him for a check-up and a few errands. And a 2nd time to get a few more errands done and to do the little clean-up things I usually do on a weekly basis. My dad's legally blind from macular degeneration, so he doesn't see much more than light and shadow. He's always been an immaculate dresser - so one of the things I do for him is straighten out his suits - he'll hang a checked suit jacket with pants from a differently-patterned suit - only because he can't see. There's lots of other stuff, but you probably get the gist.

I'll be taking him to his Alzheimer's doc tomorrow (well, Rom will probably be driving and coming along with us, since I definitely have chemo-head today and shouldn't operate even light machinery). The Alzheimer's Disease is so fascinating (if you look at it objectively) and so heart-breaking. When I was with my dad on Friday we went over and over who his children and grandchildren are (I even showed him the album of his 9 Israeli great-grandchildren). Toward the end of the 3rd or 4th time we were going over that, he asked me who my mom was. I said, "Well, Dad, that would be Mom, Eva." At which point he asked, "Oh, she was married to Rom." And I said, "Well, Dad, actually I'm married to Rom - you were married to Eva." And he said, "I don't always remember." Such a classic of Alzheimer's. But, two minutes later he invited me to stay with him for lunch. I reminded him that it was Erev Shabbat, and that I needed to get home to get ready for Shabbat. He asked me what Parsha we'd be reading- I had to admit that I knew we'd read Shmot last Shabbat, but couldn't remember what we were reading this Shabbat. This same guy, who two minutes before needed reminders about his wife and kids, then went on to list the Parshot (portions) of the book of Shmot (Exodus) - in their correct order. There are certain things for him that are "hard-wired," and they have to do with praying and reading the Torah. I have a feeling those may never go.

Back to chemo - my doc called me on Monday to tell me that she was switching me back to Taxol, the original plan. She said that during the San Antonio Breast Cancer Conference, data were presented that showed an "alarming" rate of tear duct stenosis in women who were given Taxotere (a few weeks ago, she'd decided to go with the Taxotere). Since neither my doc nor I wanted to deal with the complications of having my tear ducts screwed up, we decided to go back to the Taxol. So far, so good, I had my first infusion yesterday. I told Rom, today I feel like I have a 5-10 pound weight on my head, instead of the 50 lb, weight on my head after the A-C -- so this is good. The most common side effect of Taxol is the way it affects the bone marrow - just like with the A-C. At the Cancer Center we get blood tests before every chemo treatment (then wait 20-30 minutes for the immediate results). Those results get run by your oncologist and s/he makes the decision about whether or not you get treatment that day. Since we know that my bone marrow was so sensitive to the A-C, my doc will keep a close watch. Again, Taxol is a lighter-weight chemo, and at the cancer center they give it weekly instead of every 3 weeks. They do that to help with another common side effect - neuropathy, tingling or numbness in feet and hands. Because you get it every week, the doses are 1/3 of the dose you'd get once every 3 weeks, so maybe my bone marrow will be able to handle the lower dose.

On other fronts - we are now just less than 2 months away from Avi's bar mitzvah. We finally designed invitations and had them printed up, and are busy addressing, stuffing and stamping envelopes. They'll go out soon. The date is April 1st.

That's it for this time.

Hope you are all well, happy and enjoying something,
Debby

Rom and Debby's Blog

2006-01-12T17:31:00.000-08:00

Hello campers,

Is everyone having fun yet?

As we could have predicted, I got pretty "chemo-sick" from my last round of A-C a week and a half ago. The nausea kicked in, then all kinds of other wonderful side effects. I always see my oncologist a week after chemo, and when I saw her this past Tuesday I was in bad shape - low -grade fever, mouth sores and thrush in my mouth and down my esophagus, a white count that barely registered, and more unpleasant side effects that you don't even want to know about.

Luckily, my doc agrees that being in the hospital when you're sick is the very last resort. So we started outpatient treatment of daily hydration, IV antibiotics, antifungal and other wonderful meds, along with daily injections of neupogen to try and get my white count back up. These treatments are done in the same treatment room where we all get chemo - it's a lot like a hospital, but you get to go home as soon as your treatment is over. On Tuesday, my treatment nurse looked at my lab results and said, "Wow, I've never seen a white count this low." I'm always glad to help someone along in their educational process.

Today my white count was up - about 2 1/2 times what it was on Tuesday, but still less than half of low-normal. However, never one to let a new experience pass me by, my labs today showed that my red counts are critically low. So, tomorrow I get to go in for a blood transfusion - 2 units of packed red blood cells (I'm starting to feel like an episode of ER). My doc and treatment nurse both asked me if I'd ever had a blood transfusion before. I think I had one once during a surgery; and I know that I was on a heart-lung bypass machine in June for my heart surgery. I know they use your own blood for that, but I don't know if they need to "prime the pump" with donated blood - so I couldn't really give them a good answer. My doc says I'll feel a lot better after I get the transfusion tomorrow.

And she keeps reminding me that I'm through the worst of the chemo now. I get a break till January 31st, when I'll start with Taxotere, which they all keep telling me is a "walk in the park" compared to A-C. Sounds good to me.

On a jauntier note - nobody can figure out why, but I haven't lost my eyebrows yet. That may still happen, but for now, they're still a part of my face. My mom used to tell me that I was born with a head full of dark curly hair and eyebrows that the nurses were jealous over. And, I'm getting better at figuring out head scarves - still a novice, but figuring some things out.

On that note, go do something fun.

Hugs,

Debby

Rom and Debby's Blog

2006-01-04T15:15:00.000-08:00

Hi everyone,

I just had my 4th - AND LAST - A-C chemo treatment yesterday; and I'm still feeling pretty good today. I'm certain that's because of the acupuncture treatments that I've been receiving. I even had one yesterday while I was getting my chemo.

Rom and I were at the Cancer Center bright and early yesterday morning at 8:00. The plan was for me to have my blood draw, then get chemo about 20 minutes later, once they had the results from my lab tests. Then, right after chemo, I was supposed to go downstairs and get my acupuncture treatment. Unfortunately, my lab results weren't the greatest - both my white and red counts were low - so they had to page my oncologist and get her decision on whether or not I could get my chemo. She decided to let them go ahead and give me my chemo; but that didn't get started till after 10:00. So, my acupuncturist came upstairs and gave me my acupuncture treatment in the chemo treatment area. Luckily, I'd been set up in a bed instead of one of the chemo recliners, making it a whole lot easier for the acupuncturist.

So far, no nausea and even less of the "drugged out" feeling that I normally have after chemo. Since my blood counts were already low, and since the chemo has a strong negative effect on bone marrow, I'm guessing when I see my oncologist next week and have labs done again, both my white counts and red counts will be even lower. But, hey, given what's happened the last couple of chemo treatments, that's to be expected, and they've managed to deal with those deleterious effects with injections of stuff to goose my bone marrow back into working.

I'm going to get a break now until January 31st, when I'll begin weekly treatments of something called Taxotere. Rom and I were just reading up on the side effects. The material they gave us corroborates everything they've been telling us - sounds like it should be a much easier road than the one we've been on.

I even felt so good this morning that Rom and I visited a friend who just had the same heart surgery that I had back in June. He's still in the hospital, but hoping to go home tomorrow or the next day. He and I are playing medical flip-flop - he had cancer a number of years ago, now just had the same heart surgery (mitral valve repair) that I had. If felt so good to be able to be going to visit and cheer someone else up for a change. After that, Rom and I made a quick stop at my office to say hello to folks, then on for a quick appointment with my cardiologist, who says that it's like I've got a new heart. That's good news. He also remarked on how amazing it was that my mitral valve decided to go bad before the cancer was discovered. A lot of the chemotherapies that I'll be doing are hard on the heart - if I hadn't had the mitral valve repair done first, I might not have been able to go through the chemotherapy regimen that I need, and am now able to go through. Okay, so the Big Guy upstairs has definitely been messing with us, but He's been keeping an eye out as well.

Hope this finds all of you well and happy. For those of you following the Gregorian calendar - Happy 2006! May this be a year of health, happiness and peace.

Love,

Debby

Bonne, Suzanne and Bakura light candles w/ us the 1st night.

2005-12-26T11:26:00.000-08:00

No latkes yet for Debby, but the company was good and the dreidel competition was fierce!

Chemo Chronicles III 1/2

2005-12-24T18:37:00.000-08:00

Hi everyone,

I think I've got this set up now so you don't have to see all of the addresses of everyone this is going to. Also, just a reminder about our blog - www.romdeb.blogspot.com - once I've sent this'll have Rom show me [again - thank you very much, chemo-brain] how to post this on the blog. I think Rom's posted some photos on the blog - faithful friends trying to teach yours truly (all thumbs) how to apply makeup.

So, it's been a rough couple of weeks. I'd been forewarned that each infusion of this first round of chemo got rougher, and that the negative effects are cumulative. I thought I could outsmart it, but apparently brains have nothing to do with this. The chemo must really be doing a great job on any cancer cells left in my body, 'cause it sure has kicked my ass.

Most people know about the nausea and vomiting (hey, if its any consolation [and it is!]), so far I've been spared any duty praying at the porcelain altar. Nausea has been a whole other trip, but we finally got a handle on it on Monday, when I had my 4th treatment with the acupuncturist. I walked in and told her I'd been nauseous since I'd had chemo the Tuesday before. An hour later I walked out nausea free, and have remained that way. That's HUGE - because it's really hard to appreciate anything when you're nauseous all the time.

On Tuesday I had blood work done and saw my oncologist. I was very neutropenic - our normal white blood cell count is between 4.8 - 10 thousand/cubic millimeter. Mine was at .6. Doesn't leave the body much reserve to fight off anything. I also had a great case of "chemo-mouth" - sores in the mouth that are sort of like canker sores, but on steroids. I started daily injections of neupogen to get my bone marrow working, but Thursday was back seeing my doc again, sicker than when I saw her a couple of days before. I now also had thrush (not to be confused with T.H.R.U.S.H., for those of you old enough to remember the Man from U.N.C.L.E.) in my mouth and going down my esophagus, and, more than likely, an ulcer. Geez, how much fun can one person be having? That ulcer thing? That was fun. We had a really rough night sometime this week - Rom wanted to take me to the emergency room, but sometimes (a lot of times?) I'm too damn headstrong for my own good, and I wouldn't let him.

Thursday, Friday and today (Shabbat) I was back at the Cancer Center, getting IV fluids (kinda hard to swallow with thrush in the esophagus; feels like you're swallowing gravel anytime you take a sip of water). With the fluids they gave me antibiotics, anti-fungal medicine, and something for an ulcer, all via the IV). The thrush is almost gone, and the other sores are healing up also. The ulcer pain is gone, too. I spent a couple of days on a liquid diet, and have now graduated to a "soft food" diet - rediscovering the joys of Cream of Wheat. Something tells me I'm not going to be eating any latkes this Chanukah.

There are "little" side effects from this type of chemo that they don't even bother to tell you about - like the skin on the palms of your hands and the soles of your feet looking and feeling as if they've been sunburned.

Like I said earlier, this chemo is doing so much stuff to the rest of me that I know it's getting rid of any cancer that's left.

The treatment that I was supposed to have this coming Tuesday - the 27th - has been postponed for a week to let me get over all of these "complications" and get stronger for it. I'd hoped to actually be finished with this worst course by the end of 2005 - but this way I'll be able to enjoy Chanukah with Avi, Rom and friends. My last treatment will be on Jan. 3rd, and I'm already figuring that it will just mean that I'll be sick and go through a lot of what I just went through ... and then it will be over. Then I'll get a little bit of a break, though good ol' chemo-brain here keeps forgetting to ask her doc how much of a break, before I start the Taxol round of chemo.

So we made it through this one, and we'll make it through the next one. One of the ways that we've made it through all of this is the support of friends - those who are near bringing meals, giving Avi rides, dropping by lots of books, calling and just stopping by. It's been incredible. So have the emails, e-cards, and phone calls from folks farther away. Thank you all.

Happy Chanukah for those of you celebrating Chanukah, Merry Christmas for those of you celebrating Christmas, and best wishes for a wonderful 2006. Rom and I are hoping for a boring year.

Love,

Debby

Debby has a make-up party w/ Robin Keller

2005-12-16T10:38:00.000-08:00

Debby got a make up kit from The American Cancer Society and had her friend Robin Keller over to play. Einstein entertains himself in the backround!

Avi pulls out hair, Edie and Bracha clip.

2005-12-13T21:05:00.000-08:00

December 13th, 2005 Chemo ROUND 3

2005-12-13T21:03:00.000-08:00

Hi everyone,

Hope this finds you well and enjoying.

I figured I'd better get this out tonight - I had my 3rd chemo treatment today, and they're telling the truth when they say that the effects are cumulative. The last two times I felt pretty good until Wednesday evening. This time that stuff is coming on a lot faster.
The good news is I only have one more of these treatments; then I move on to something that is much easier to tolerate - can't wait for that.

After the last treatment I ran into a little problem of my white blood count taking a serious nose dive. But my doc set me up with a program of daily injections of something called neupogen, and by last Friday my white count was back up in the normal range. That meant that Avi, Rom and I got to go away for the weekend with Avi's Amitim (bar/bat mitzvah) class and their families. We were in a beautiful place - the Marconi Conference Center - on Tomales Bay, north of Point Reyes. Accommodations were great, the all vegetarian food was delicious, and our time together was truly wonderful. The kids in the class (there are 20 of them!) really bonded - by Shabbat afternoon they were traveling in one amorphous mass of pre-teen hormones. Friday night, after a program for the whole group, the parents were hanging out in one place, the kids in the other. We'd agreed with them that a parent would check in on them every 15 minutes. One of the other mom's guessed that what they were doing was "trying to figure out ways to trade spit." I know when I checked on them, after knocking on the door of the room where they were I heard someone scream "Hide!" A half hour later when one of the mom's checked on them, she came out of the room and her glasses were fogged. Ah the joys of entering and early puberty. It was great to daven, learn and socialize with the other parents in this large group as we gear up for our kids' bar and bat mitzvahs. It was also wonderful to spend a weekend in a reality not based around cancer and chemo.

Right now cancer and chemo are like a full-time job. But Monday just over a week ago I went to a 2-hour "seminar" for women at the Cancer Center where I get my treatments called "Look Good, Feel Better." We got instruction on makeup (like how to brush on "eyebrows" once yours fall out) and skin care, a bunch of free products, and wigs. We also each got a free wig from the American Cancer Society, but mine looks like road kill, so I don't think I'll be wearing it a whole lot. There were only 5 of us in the group, and 4 of us on the same chemo regimen. One of the women in that group had already finished her 4 treatments of A-C (what I'm doing now), and was almost halfway through the next set of treatments - Taxol. She said that Taxol is MUCH easier to take than the A-C, which was good for those of us still in the grip of A-C to hear. She was the person on whom the cosmetologist did the fake eyebrow demonstration, just confirming that it takes a long time to get your hair back. There's a picture on the blog of me as a no-hair lady (www.romdeb.blogspot.com) - it's too cold to walk around bald much, so I'm wearing hats and scarves to stay warm.

I also finally started acupuncture - also at the Cancer Center - with a doc who was trained in both Western and Eastern medicine in China. She then came to the states, did her residency, and was licensed here. She's got this unique ability to understand all the Western stuff - the chemo and other drugs, lab results, etc., and then to use acupuncture and Chinese herbs to help ease the negative effects of the Western drugs. I feel incredibly fortunate to have that as part of my treatment. I'm still early on in the acupuncture - I've had 2 treatments so far, and will have another one this Thursday - we're hoping to cut back on the number of days that I'm sick after chemo, and to lessen the amount that I'm sick. Folks say it works, and I know that the day after each of the 2 treatments I've had, I had more energy and felt a whole lot better.

Have a great week all.

Love,

Debby

Debby's Buzz-Cut Hootenanny

2005-12-05T11:12:00.000-08:00

Debby had some friends over last Thursday night to get rid of that pesky hair that was falling out all over the place. She's looking like a cross between the Veeger character in the 1st Star Terk movie and Mahatmah Gandhi ! Pretty sexy, eh?
Rom

Follow up to 11/29

2005-11-30T10:44:00.000-08:00

So I lucked out - my doc didn't think I was sick enough to hold up chemo, which is a good thing. She also changed my anti-emetics (that's anti-nausea drugs), adding he one Annie suggested, and changing what I get IV before the chemo to something that is stronger and lasts longer. Hopefully this combo will work - and if not .... well, it's a few days every other week till the end of December and then it's done.

Today is Rom's and my 20th anniversary -- I think that split of champagne will have to stay on ice for a while longer. But, since I've been up for a couple of hours already, got some home made scones I'm about to pop in the oven for a special breakfast. Gotta do something with all of this extra energy that I get for a day from the steroids they give you along with the chemo. Baking keeps me out of trouble.

Have a good one.

Debby

Chemo Chronicles II 112905

2005-11-29T09:22:00.000-08:00

Hi everyone,

It's the morning of what I hope will be my second chemo treatment, but I won't know for sure till I've had my blood work and seen my oncologist. I seem to have come down with a bit of a cold - not a big deal at all in regular times, wouldn't even keep me away from work. But in the world of chemo and compromised immune systems, this could hold up the works. So, here's something weird: I'm hoping that I get to do my chemo today - knowing that that will mean looking forward to at least 3 days of feeling pretty awful. It's about wanting to get this fist round, which everyone tells me is the worst, over and done with. It'll be what it'll be - one of our new favorite sayings - and we'll know in a couple of hours.

Getting through that first week of chemo was interesting. The day after chemo I had my first experience of "chemo brain". My sister, Judi, took me to the Cancer Center to get my Neulasta injection (that's the stuff that gooses your bone marrow into making more of those good blood components that get zapped by the chemo). Then we had some time before we needed to pick up Avi, so we went to Scandinavian Designs to look at sofas. A couple of hours later Rom called on Judi's cell phone. After hearing her say "Hi Rom," I watched her eyes get round as saucers as, she explained later, Rom asked her what we were doing at Scandinavian Designs. Seems I left my cell phone there and didn't even realize it. A few hours later Rom called my cell to ask me how I was doing, and was surprised to talk with some nice Danish guy. It would have been fun to be a fly on the wall of Rom's brain for that brief nano second that it took him to realize that I wasn't having a clandestine coffee with some Bjorn Borg type.

I'm still trying to figure out how to explain to the library that I really have no idea what I did with one of the books that I took out a few days before I started chemo. I've read 3 since I started chemo - can't even remember the titles or what they were about, and for the life of me, I can't find one of them. Probably need to go look in that parallel universe inhabited by single socks from the dryer.

Once I got through the yukkiness, I ended up with about a week of feeling pretty good, and even with 4 days of having almost as much energy as I usually do. My doc is adding a new medication to try and reduce the number of days that I feel bad (thank you Annie!), and hopefully to help me not feel as bad on those not-so-terrific days. I'm also going to push for medical marijuana. The non-medical variety was very helpful on the bad days this last time, and now I've learned that you can put it in a vaporizer rather than smoke it (thank you Rikki), thereby avoiding inhaling those other toxins that my oncologist was worried about.

And, because the yekke (that's German Jew for those of you who don't know) in me reigns supreme when it comes to punctuality, my hair has begun to fall out in earnest. I would guess we'll be looking at a buzz party by the end of this week if I'm feeling up to it. Maybe we'll turn it into a Saturday night hootenannie, for those of you old enough to remember what that is.

Rom just reminded me that I should be putting this on the blog - I'm pretty sure he's shown me how to do that, but for the life of me, I can't remember. I know the address (bu that's because he's got it on a post-it stuck to the monitor): Romdeb.blogspot.com

If you don't want to get these quasi-conscious meanderings, send us back an email. I promise to try to remember to take you off the list.

Enjoy whatever you can.

Debby

2005-11-22T18:04:00.000-08:00

A post from Debby from 11/21/05

Hangin' in there, definitely -- I even went into work for about 3 hours this morning. I love the idea of turbans - have to try one, I have a feeling I might look silly in one. Large embroidered kippot are also a good idea. I'll definitely have to find a place to hold my varied head-coverings. So far my hair's all still here - but they told me to expect losing it about 2 weeks after my first treatment (oh, g oodie - just in time for my 2nd treatment). Yeah, I qualify for medical marijuana. We discussed it with my oncologist before I started chemo - she wasn't real hep to the idea, saying she worried about the other toxins in marijuana, and wanting to think about prescribing marinol. I've heard from a few people that they really DON'T like marinol. I'll talk with my oncologist again, especially now that I spoke with a friend who's going through chemo and puts her medical marijuana in a vaporizer so she's not smoking it.

Debby's Cancer Journal 1

2005-11-16T11:34:00.000-08:00

Hi everyone,

So, quick back track, because I think I might be surprising a few of you with this email. I was diagnosed with breast cancer in September, and had a lumpectomy and sentinel lymph node biopsy in early October. I'm in almost the best possible situation: cancer was caught early, relatively small tumor size (1.2 cm), no spread to the lymph nodes (BEST news), and I'm post-menopausal - a good thing in the world of breast cancer. Two down-sides to the tumor are that it's an aggressive form of cancer and a fast growing one. Hence, the chemo.

I'll be doing 2 different rounds of chemo, then take a break from chemo for some radiation (why leave the docs on that side of the hall feeling left out?), then back to a last round of chemo, which is actually a biologic agent (for you scientific types, a monoclonal antibody). The first round of chemo that I started yesterday is the most difficult - often makes you sick (nausea, vomiting), weak, and - yes folks - anyone in a close enough vicinity will soon get to see the dent in the top of my head that so many have wondered about over the years. This means, of course, that I'll get to expand my wardrobe in an area to which I've never really ventured, head scarves and hats. All this should start happening within the next 2 weeks - so if you have any suggestions, start sending them on over.

I'm doing all of my care at the Comprehensive Canter Center in the Herrick Campus of Alta Bates Hospital in Berkeley. The funny thing is the back of the office building in which I work opens up to the entrance to the hospital, so I have an easy walk on days that I'll be able to be at work. The folks who work at the Cancer Center hearken back to what medical care was like in the "good old days," well, except that the medical part is a lot better now. They are friendly, helpful and go out of their way to make a tough situation as easy as possible.

A week ago I had what's called a "portacath" installed in my chest. This allows them to do blood draws and deliver all of my chemo by using this "shunt" that was placed surgically under my skin. It means one hardly-felt pinprick when I first get there. The pre-chemo blood tests are done though there; then the chemo; then the post-chemo blood tests. Beats the hell out of the constant pokes in the veins, and relieves me of having to explain to anyone who might ask that I really am not a heroin junky.

Right now I feel pretty good. A little bit like I was the passenger in a car that took lots of turns around a curvy mountain road ('course, this is with one of the anti-nausea medications they gave me already on board). My guess is, judging from what I've heard from friends and from my nurse yesterday - who went through this herself 2 years ago - by late this afternoon or tomorrow I may not be so chipper. It'll be what it'll be. I know that I have to do 4 doses of this first round of chemo. They will try to do this every other week for 2 months. If my blood counts stay good, then I'll be done with this round by the end of December. If they have to spread them out a bit to let my bone marrow recover, then I'll be done with this first round by the end of January.

After this first round, for those of you interested, this is a combo of Adramycin and Cytoxan, I'll go into my second round, which will be weekly infusions of something called Taxol. The about 6 weeks of radiation, 5 days a week; and finally weekly infusions of the monoclonal antibody, called Herceptin.

For anyone doing the math, it is most likely that I will still be bald for Avi's bar mitzvah. So if you've got any ideas or suggestions regarding hats or scarves, let me know.

our e-address is romdeb@pacbell.net or direct to me at: graudo1@pacbell.net

Love,

Debby