Inpatient and out (or there and back again, with apologies to Tolkien)

Big news  -- I spent much of the past two weeks inpatient at Swedish Medical Center. I had been complaining of mouth pain from my ONJ spot and then I twisted my back and was really in terrible pain. Rik got me to the ER just in time for a major crash on my part. I was admitted immediately, sent up to the 8th floor (close to ICU, 1:1 nursing) and then was moved up to 12 East, the oncology unit.

I experienced my own "perfect storm:" over-dosing / self-medicating for pain; residual issues from last November's radiation treatments, including gamma knife for the brain mets; pneumonia left from last October's admission; even the most recent chemo plus all my medications.

While I was on Planet Jill, my own private universe, there were days when I couldn't say more to Rik than yes, no and help. It was so frightening for him after 13+ years of relatively good living with mets to have more than one mental issue to deal with and to have to manage everything about my care. Thankfully we had already had a health care / end of life discussion many times and he knew what I wanted. And that Dr G always said he'd be totally honest with Rik. So when asked if this was it, Dr G said, maybe not today but could be soon.

And then my friends D and C walked me around the halls and we sang. They managed to reach me in å way no one else could, with music and other languages, not English and conversation. Other dear friends were able to draw me out as well.

By the 10th night I was almost fully recovered. I finally understood why I was a fall risk; why the bed was alarmed (the chair had been too); how to sleep even with all the light (I hadn't slept more than four nights total). I made a deal with this night nurse to really ring and wait if I had to get up to use the toilet. She in †urn explained all this over and over again until I really got it. The next day I went home.

This private trip to my own universe was frightening. I've never been happiest alone in my head. I've always been an extravert, getting my energy from other people. I knew I was not connected to the rest of the world, but I didn't know how to re-connect. And so I suffered and think I was an obnoxious patient, insisting that I didn't need the level of supervision they gave me. I was wrong, of course, but I didn't know that. And so the positive experience other cancer friends have had on 12 East passed me by. I was miserable, sick, out of my head and unable to express myself.

Eventually NP Joanna diagnosed the troubles, pulled all my medications, and added back each, one at a time. I couldn't even express that I still had pain in my mouth and feet. She had pulled the gabapentin for my neuropathy and concentrated on the other issues. She ordered many tests, including CTs, MRIs and even a bronchoscopy to determine the extent of my pneumonia. When I couldn't sign my name to the release form, but could remember to tell the anesthesiologist about the ONJ spot in my mouth plus the loose tooth, things began to come to together for me. And that was my last night in the hospital.

So I want to apologize to the wonderful nursing staff on 12 East for being such an obstreperous patient. And I want to praise three women in particular -- NP Joanna, traveling nurse Kristina, and a wonderful Filipina NAC whose name I could never even pronounce, much less remember. Joanna saved my life, plain and simple. Kristina reached me most effectively as a person and handled my discharge swiftly and easily. And my precious Filipina NAC helped me shower, helped me with joy, and helped me relax and be okay with depending on others.

I am so glad to be home and able to get to the bathroom without having to ask and wait for help!

Low fever

It's been a week of low fever, constipation, diarrhea and general feeling poorly. I did too much on Tuesday after chemo Monday, which didn't help at all. I cancelled everything for today and barely had the energy to take Tylenol, eat and shower.

I'm off to the sofa to recline for the rest of the afternoon after spending most of the day in bed.

Healing

I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.

On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.

The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.

The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.

I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.

When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.

My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.

I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.

My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.

And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.

More soon on the Komen © blogger summit later.

Pain update

I spent a long, quiet week filled with discomfort and pain. Sunday's sunshine made it easier to get out, but I had noted the wrong date for my lunch. I ate anyway (I was hungry! steroids....) and then ran into a friend of a friend I hadn't seen in a long while. We had a lovely catch-up.

On Monday The Amazing & Wonderful Nurse Jacque flushed my PICC line (remember my PICC line and the old port-a-cath?). A nurse at the Swedish Wound Healing Center changed the dressing over my old port site. She also taught me how to remove and insert the special stuff they use to promote internal healing. That is really one deep hole but I think it's coming along nicely.

On Tuesday The Amazing & Wonderful Nurse Jacque gave me a shot of Neulasta. Dr G increased my fentanyl from 25 mcg to 50, then to 75, and yesterday to 100 mcg. I felt a bit woozy all day ling until I realized that not only didn't I eat breakfast, I forgot to take my morning meds, including the Cymbalta. That can really mess with you if you miss a dose. Their website says to "take the missed dose as soon as you remember. Skip the missed dose if it is almost time for your next scheduled dose. Do not take extra medicine to make up the missed dose." So I took my morning dose at 2 PM instead of 10 AM. That would surely explain my woozy feeling, on top of 100 mcg fentanyl. I did remember to take today's AM steroids in my taper-down package.

Later today I spoke to the GelClair pharmacy tech. The Amazing & Wonderful Nurse Jacque ordered it for me and the tech called to arrange delivery. They will FedEx it to my hotel in DC. Such wonderful customer service!

On Sunday, when I spoke to both Dr G and on-call oncologist Dr Z, they both seemed to think I might have thrush, so Dr Z prescribed Nystatin, an oral rinse taken four times a day (after each meal and at bedtime). The Amazing & Wonderful Nurse Jacque told me today that's not as likely given my other side effects and recommended I stop the Nystatin now. She also suggested buying some Orajel to apply on the mouth sores with a Q-tip. Rik went to the pharmacy for me and I just tried it. AMAZING! I finally have some relief from pain in my mouth. I don't know how long it will last but this is such an improvement over five minutes ago....

Why am I calling The Amazing & Wonderful Nurse Jacque so AMAZING and WONDERFUL? Because she gave me her direct line, so I could call her if I really needed her. When I didn't understand why I was both hungry and nauseous an hour ago, I called her. She re-affirmed that the steroids made me very hungry. I wasn't eating a lot anyway, because of the painful mouth sores. And that hunger can indeed cause nausea. Then I carefully held the phone away from my head and vomited a small mess of everything I'd eaten during the past hour straight into the sink: ice cream and a cheese stick. The Amazing & Wonderful Nurse Jacque first asked me if I felt better (I did) and then told me not to eat ice cream. Dairy can contribute to nausea. Who knew?

So Jacque is now officially The Amazing & Wonderful Nurse. I tell her this all the time, Now it's official.

Major Taxotere side effects

On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.

I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.

The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)

Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother.

Back to Taxotere side effects.

FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.

Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.

At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.

My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.


SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.

I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.

The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for),  eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!


SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.

It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.


And that Gilda quote I chose?

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."

Ibrance update

The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.

Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.

I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.

So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!

A week with Ibrance

This week I've been getting used to Ibrance (palbociclib). This is the brand new chemo recently approved by the FDA.

I took the first dose last Thursday morning and felt woozy and slightly nauseous all day long. After asking my nurse, I switched to taking it at night. Her theory: if I took it at night, the nausea etc. might not bother me as much. All weekend long I was still slightly nauseous and tired, but by Monday morning I felt like my usual self. That's continued for the rest of the week.

Other side effects have included joint pain in my wrists and elbows as well as in my hips, but hip pain was a chronic discomfort long before I took the first dose of Ibrance. I've felt moderately fatigued, and sleep about 12 hours a night. If I feel nauseous, I take Ativan and it stops the nausea but also puts me to sleep. So I've napped every afternoon as well.

I've had an odd side effect. I've felt a strong need to urinate, combined with low back pain, that caused me to suspect I had a urinary tract infection. Lab tests indicated no trace of an infection, but I still had that too- frequent urge to "go." Nurse J is looking into this as a possible side effect, and a friend who is on the extended trial at Swedish told me that one of those women reported something similar. We shall see. I've been taking AZO over-the-counter to help deal with the pain and discomfort I experience at night. Last night was the first night I slept straight through from 1 AM (the last time I gout out of bed to pee) until noon.

Now it's time for my nighttime snack. Ibrance must be taken with food. Let's see, shall I have a bowl of cereal? Cracker with cream cheese or nut butter? Half a toasted bagel with butter? My stomach grumbled at that last, so bagel it is.

Do send me your ideas for a quick and tasty late night snack, preferably low in sugar. I clearly have to expand my snacking horizons...

Chemo update

I finished the third dose of Abraxane last week and this morning I noticed that my hair has started to fall out. Right on time, I suppose. I made an appointment for tomorrow morning with the hairdresser to buzz cut my hair and trim my wig. I may want to buy a second wig in a slightly different color. My wig, which cost a lot of money and is artificial, is much darker than my hair color now after a summer in the sun.

Other than hair loss, the side effect from Abraxane that bothers me is the increase in neuropathy in my feet and its beginning in my fingertips.

My fingertips aren't painful, just a little sensitive. The neuropathy hasn't spread further down my feet; it's still confined to my toes, but the intensity has sharpened dramatically. I will try to get in to see an acupuncturist.

My feet hurt so much most nights that it can take me about four hours to fall asleep naturally. If I need to be up and active early in the morning, I take Ambien and hope that it gives me a full night's sleep. I just don't want to be dependent on it. So I'm learning to get by with less sleep.

I'll try to remember to post a photo tomorrow after my buzz cut. Hopefully the hairdresser will leave a little hair, maybe half an inch in length, so that I'll look trendy instead of bald.

And I am so thankful that I had my eyebrows tattooed a couple of years ago! Now I won't see a space alien, or a balding brother, when I look in the mirror.

Resting up or recovering?

Ever since Rik came home I have spent a lot of the last week sleeping or napping.  I think I am making up for lost sleep (dogs waking me every morning at 5 am) while Rik was away. Or it could be regular Xeloda/Methotrexate fatigue. I am looking forward to having the rest of the month off of chemo!

My tongue is much better but lately my BRONJ spot has been bugging me. I am going to try to see my dentist this week. I've had multiple infections in this spot in my mouth and I don't want to go to Bulgaria already sick with something.

Speaking of, I feel almost ready to depart. Still some medical stuff to take care of (unbelievable! I've been doing this for weeks now but I keep forgetting things.). Money issues all squared away, packing list started, borrowing a mid-size suitcase from a friend, etc. Just have to learn the last two songs…..

Post-Xeloda stuff

I finished my recent round of Xeloda last Saturday and by Monday the side effects kicked in hard. Painful numb feet (neuropathy and Hand-Foot Syndrome), cracked and painful hands (Hand-Foot Syndrome again), fatigue, diarrhea etc. Plus Rik is away and so I have picked up all his daily chores in the meanwhile, such as waking up at 6 AM to feed the dogs, walking the dogs twice daily, and more. It makes me more tired than usual, and perhaps that's why I feel the Xeloda after-effects more than usual.

I had my last major infusion (before going to Bulgaria) of Avastin, Aredia and Faslodex yesterday. It took more than three hours plus the time I waited for Dr G to sign the orders. (I do think he's the best, but getting the details done while I wait just frustrates me.) Then of course I had to fight rush hour traffic, feed and walk dogs. By 6 PM I was crashing. Good thing I predicted this would happen and moved choir rehearsal away from here so that I could sleep.

Rik texted me at 1 AM this morning. (I don't think he read the time difference correctly.) But it was our first chance to "talk" since he left. Even though texting is no substitute for a real conversation, we got caught up a bit.

Chemo-cation

I finished cycle 12 of Xeloda with an increase in Hand-Foot Syndrome but only at the very end of the cycle. I lost three layers of skin on my thumbs and first fingers but they're healing nicely. My tumor markers are still stable!

Dr G said, Oh, I'm hurting you! I reassured him that I was coping but really I think I am getting close to the end of my Xeloda tolerance. 

The dentist says my sore tongue comes from the same side effect. Basically the skin covering my tongue has Hand-Foot Syndrome (!). She could hardly believe that I still have taste buds. 

My new opthalmalogist/surgeon says that 18 months of Abraxane likely caused the cataracts in both eyes. I am having the surgery in January, so I get a three week chemo-cation (plus the week recovering from the first surgery). 

Between eye surgeries I'll have one more Xeloda (round 13) and then we will re-evaluate during my second three week chemo-cation. Dr G wants to add Afinitor to the mix (Xeloda, Avaston, Aromasin, Aredia). I had Afinitor before without much luck and plenty of side effects, but I may be close to the end of what I can tolerate from Xeloda. However, Xeloda has me stable and I do tolerate pain well. (I am sad that I had to learn this about myself, but it's one of the things cancer taught me.) There are plenty more drugs out there plus anything new that comes out of the recent ASCO conference.

Penultimate day of Xeloda round 12

Yesterday was the second-to-last day of round 12 of Xeloda and it hit me hard. By mid-morning I had diarrhea, followed by fatigue, hand-foot issues, and mouth sores. I decided to cancel the neighborhood Shabbat dinner we'd planned to host for some folks from our synagogue because I could barely hobble, much less shop and cook. Everyone understood and sent me wishes to feel better soon. I slept the rest of the day. Rik ordered some Chines food and I crawled into bed around 8 PM.

The hard thing about all of this was that I'd forgotten how awful the chemo side effects can be, since I don't experience very much on Xeloda. Yes, I have a lot of hand-foot syndrome, but for some reason it wasn't so bad this month. I didn't even have to use henna! But I keep forgetting from month to month what the last two days of each cycle and the first two days of the time off can be like. Xeloda is cumulative, so I feel much worse at the end of the cycle than at the beginning.

So today is the last day. My feet hurt so much when I got out of bed to use the bathroom that I couldn't bear to stand. Rik brought me some yogurt and my morning meds but I stayed in bed until 1 PM. Hunger finally drove me up and by then my feet were less tender, the diarrhea had stopped and I really couldn't sleep any longer.

This is how it goes: I feel rotten, I blog about how rough it is. Then I feel better, I live my life, and I forget to blog except for special things, like holiday celebrations.

I guess I need to put my blogging on a schedule so that I don't go too many days on "quiet mode."

Quickly - new dog

Dr G approved one more round of Xeloda and is giving me an additional week off, because the hand-foot syndrome is still annoyingly painful. Other than continuing fatigue, I am healthy!

Here are photos of Bobka and Boychik (he's the new one, the cocker spaniel).

Catching up

I realize I haven't been blogging lately. The last bit of Xeloda round 9 really got to my hands and feet. For round 10 I reduced the dose again, but my hands have still not completely recovered. The skin on the tips of my finger is peeling and has little sensation or pain, depending on what I'm trying to do. For instance, for about a week I couldn't turn on a lamp because holding the switch to turn it was so painful. Rik had to cook for a couple of days too, when I found it painful to hold a knife. Fatigue played a role too, and I had a couple of days of diarrhea.

Last week we had painters in the house to fix the bedroom ceiling where water had leaked. We had the roof re-done during the summer, but the painter wasn't available until now. So every day I woke up when Rik left the house, about 6:45 AM, which is very tough on me. The painters arrived around 8 AM every day, but didn't always stay the whole day as things were drying. The result, aside from my fatigue, is a beautiful teal blue color on the walls, a warm cream color on the trim, and a lovely lighter teal on the ceiling. I bought drapes in brown with a teal, green and yellow pattern.

We moved the furniture back in (having slept on the sleeper sofa during the week) and friend L came over and reconnected the dealing fixture. All that's left is to rehang the art, a small mirror, and the Japanese haori jacket S gave me. It's purple with teal trim, so it will look beautiful on the teal blue wall.

More later about our new rescue dog!

End of round ten

I've had ten cycles of Xeloda and am apparently still doing well, although my hands and feet are very bad right now. My hands have that burning sensation and it's hard to use them for anything in small motions, like chopping food with a knife. The webbing between the thumb and forefinger is particularly painful.

My feet are, by turns, either or both numb from neuropathy and painful from hand-foot syndrome. It's hard to walk when I first get out of bed, then it eases up, but after only a couple of hours I can't stand any longer.

I don't mean to only complain in this post, but these side effects are the realities of living with metastatic breast cancer.

Xeloda round 9 and holiday update

I finished the ninth cycle of Xeloda on Tuesday and I am paying the price for agreeing to up the dose back to max again. I just never remember that increasing the dose gives me terrible side effects of more hand-foot syndrome, diarrhea, and fatigue. I stumble around because my feet hurt and I sleep until late morning because I'm so tired. At least I have the good tincture of opium to dry up the diarrhea. But for four days in a row?!

The Jewish new year holy days have been lovely. This year's fast for Yom Kippur was particularly long because the holiday fell so early in September. We gathered for a quick dinner at 5 PM and headed off to synagogue at 6:15 or so to get good (i.e. comfy and not folding) seats. Services began at 7:15 and the fast ended at 8:15 the following day, so it was a bit longer than a 5 hour fast.

I enjoyed leading Yizkor, the memorial service. It's an honor and a pleasure to help people remember their loved ones who have died. I try hard to give enough emotionally so that I can connect with people's feelings, but not so much that my focus on my own losses distracts from my leading the prayers.

Ne'ilah, the closing service, is usually highly energetic at our synagogue. We've been together as a community for a long day, we've prayed together, sung together, and listened to words of wisdom from members and our rabbi. We conclude with a final blast from not one shofar but many shofarot. Anyone, of any age, who brought a shofar to the synagogue can stand up in front and try to hold the longest note. The noise defines cacophony, and the shofar blower holding the longest note this year was, as usual, my friend K. Man, can that man make his shofar sing!

The next day Rik and some friends built the sukkah, a shack resembling what our ancestors lived in while they were bringing in the crops. The harvest aspect is like Thanksgiving, and the decorating aspect is kind of like Christmas (evergreen boughs, lots of silly decorations, and lights). This year marks the 19th since Rik and I met during the Sukkot holiday. He says building the sukkah is a lot of work, but the finished product always makes him happy, because it reminds him of the day we met.

Starting a new year

Tomorrow night marks the eve of Rosh Hashanah, the Jewish new year. I have a lot to be thankful for as this High Holyday season begins.

I appear to be in good health, with tumor markers continuing to fall while I am taking Xeloda. There are few side effects, and the most annoying (Hand-Foot Syndrome) has responded well to henna. I would like to continue taking this chemo as long as possible because it is so effective and so tolerable.

Today my shrink Dr Dobie offered suggestions on how to treat my chronic insomnia. I was taking the Cymbalta at the wrong time of day! Tomorrow I will begin taking it in the morning. I can increase my dose of Ativan and take it 90 minutes before bedtime. These two shifts should help me get better sleep.

I just spent the long weekend in Cincinnati with my mother and sister. We went for a family wedding, but this was also the first time we'd ever taken a trip together, just us girls. We laughed and talked and had a great time. I took the opportunity to reconnect with three high school friends. We started at 6:30 pm and closed the restaurant down at 11 pm. Marvelous! Plus I ate Graeter's ice cream every day. The wedding was fun too, as was spending time with my distantly related cousins. We've been close since 1968, when my family moved to Cincinnati, and have shared one another's simchas over the years. I think the bride is my third cousin, once removed.

As far as spiritual health, all I can say is that I am a practical Jew in the way that Hadassah is practical Zionism. Hadassah builds the land of Israel; I cook, sing, dance and generally find ways to bring joy to my life on a daily basis.

That's what I've learned through 11 years of living with advanced cancer: live your life with joy every day.

L'shanah tova u'metukah -- to a good and sweet year!

I am a Bad Girl

Sorry I haven't posted more. When I feel well, I tend to be too busy to blog. Here's the recap:

Dr G says my numbers are good. The tumor marker has gone down another 20 points, so I am staying on Xeloda for another month. But somehow I got hooked on the nightly Ativan. Of course, I'd been taking it for about two months... Dr G recommended it as a way to "quiet" my feet at night, by taking 1 mg of Ativan an hour or so before going to bed.

Sadly, Ativan is a bit habit=forming, and after eight weeks, 1 mg was no longer enough to give me good sleep. So now I am dealing with rebound insomnia. I didn't sleep at all for a couple of nights, then took an Ambien, then didn't sleep again at all last night.

My feet continue to feel numb and painful at the toes. The neuropathy is a holdover from almost two years ago when I was on Abraxane. It leaves the body very slowly, in some cases never. So it's lingering in my feet at the toes, the last extremities.

In any case, I've felt well enough to go to synagogue, out to dinner, cook dinner, etc. Yesterday was the start of my second week off Xeloda, and I hope to feel even better and get more sleep!

Tumor marker continues to drop

I got a peek at my recent labs and my tumor marker continues to fall. It's down another 20 points or so (I can't remember). Since my Xeloda side effects are still minimal , with three days to go on this cycle, I will hope to stay on this as long as it works.

My feet are a little tender, especially the heels, and the joints in my thumbs feel the same. Nonetheless, this is much improved over the last cycle of Xeloda. Perhaps the henna is working!

Diarrhea again

The Xeloda pattern seems to give me diarrhea at the end of the second week or the beginning of the third (off) week. Today has been miserable, with tummy upsets. I am taking the tincture of opium but not sure it's really working. It's holding back each round of diarrhea by about six hours. I can take it more often (up to every three hours) but I don't want to go too far in the other direction.

I got on the sofa right after breakfast and slept for several hours, then woke up to use the bathroom, drink a glass of water and eat some crackers. This is also the part of the cycle when I lose a couple of pounds -- I don't have much appetite and I'm afraid to eat all the yummy fruit we have in the house. So it's BRAT for me (bananas, rice, applesauce and toast). And water.

My feet are still red and painful, same for my hands but not quite as much. I see Dr G tomorrow so will faithfully report all these side effects.