Chemo Chronicles XVI

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

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

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

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

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

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

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