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.




Brain scan results good

My recent brain MRI shows stable disease -- some mets are 1 mm smaller, some are 1 mm larger, but overall this means stable disease. Now that's a nice way to start the new Jewish year.

Gmar hatima tova -- May you be inscribed (in the Book of Life) for Good.

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!

Rain, rain, go away...

Unbelievably, it's raining and cool in Seattle these past two days. Normally August and September are the most beautiful months of the year, when it comes to weather. Right now it's pouring! I planted some lettuce and chard seeds yesterday. I guess I won't have to water them any time soon.

I think I will curl up with a warm puppy and a good book for a bit. Maybe a cup of hot cocoa too...  At least it's not so cool that we have to put the heat on. That's been known to happen from time to time. When my sister and niece came to my 5th metsiversary, it was so cold we had to loan them long pants, long-sleeved shirts, and fleece.

What else can you do when it pours?

Starting Xeloda cycle 9 next week

I saw Dr G today and he says my tumor marker has fallen a few more points (now 152). My other numbers all  look normal, including my liver function (an indication of the health or lack thereof for my liver mets).

However, I did complain to him about recently having to "reach" for words. You know, when you can describe the thing but can't come up with the actual word right away. Dr G says it could be a sign of chemo brain, or even middle age, but he wants to order a brain MRI in case it's my brain mets acting up.

I will have the brain MRI on September 9th and see him a few days later to get the results. In the meantime, I will continue on the same regimen of Xeloda daily by mouth, Avastin every two weeks by infusion, and Aredia and Faslodex (infusion and injection) every four weeks.

I say, let's drink rose wine, eat ice cream, pick the blackberries and generally enjoy the rest of the summer.

Happy metsiversary to me!

Today is the eleventh anniversary of my dance with advanced cancer. Eleven years ago today, August 20, 2002, I got the news that my cancer had returned and I broke my left femur, which was riddled with metastases. Read all about it here.

In these eleven years, I have been on many medications. I've had multiple side effects. My cancer has been stable, has grown, and has been stable again. Right now it's stable on Xeloda and a combination of other drugs, thanks to the brilliance of my oncologist, Dr G (yes, he is the smartest man in the world), and to my indolent (i.e. lazy), slow-growing cancer.

I've lost so many friends to cancer over these eleven years and longer. Some I knew well and were particularly dear to my heart (oh how I miss Charisse, Emily, Josh, Dena, Sirron, Stephanie). Others I met through support groups or as mentorees through Sharsheret and Young Survival Coalition or were referred by friends. Each death was a loss to me. How can I not have survivors' guilt after losing so many, especially young, people?

And yet, here I am -- kind of an Energizer Bunny of metastatic breast cancer. I just keep ticking along. I now have brain mets, bone mets, and liver mets. Each new diagnosis whirled me yet again on the cancer merry-go-round.

But whether I am riding up and down on a merry-go-round pony or sitting on a bench, I am still a "glass half-full" person. That natural optimism helps me cope with the pony's ups and downs. I think I live a better, more fulfilling life because my glass seems always half full. At least it's easier to cope this way.

And to you to whom I may seem like Pollyanna, you've also read about my hard times here on this blog. To those who see me in public and think I look so well, it's because when I feel poorly, I don't go out. Some days I only move from the sofa to the bathroom and back again. Rik cares for me, Bobka the dog cuddles with me, I eat a piece of chocolate and am thankful that my life does go on.

So today is the one day I might give cancer a big, wet Bronx cheer, otherwise known as a "raspberry." And we will celebrate with good friends, delicious food, and my personal four food groups -- chocolate, champagne, whipped cream and potato chips (I never met a fried potato I didn't like).

To all my doctors and nurses, to the health care assistants who cheerfully welcome me and treat me like a real person and not a diagnosis -- thank you. This dance with cancer is a partnership among us all.

Here's to living with cancer!

Dunava on the radio

Tune in to KBCS FM on Friday morning around 11 a.m. PDT to hear my choir, Dunava, singing songs from our new CD, Bulgaria, on The Caravan

Seattleites: it's at 91.3 FM. Everyone else can stream online at KBCS.

More insomnia

I've had several more bouts of insomnia lately. Even Rik joined me in not being able to sleep one night last week!

I can't figure out why this is still happening. I weaned myself off nightly Ativan at least two weeks ago, but when I get into bed I find I cannot fall asleep. And when I finally do fall sleep, usually around 2 or 3 AM, it's patchy -- I awake frequently -- and I hardly ever feel rested. So I stay in bed until 10 AM when I tell myself I really need to get up.

I may have developed a very short window after getting into bed when I can fall asleep easily. But if Rik coughs, or I turn over, or someone says something, sleep ends for me until the middle of the night.

Last Friday night it also didn't help that some young men were standing in front of our neighbor's house (across the street) talking and carrying on until almost 3 AM when a thunderstorm and rain finally drove them away.

I try not to nap during the day so that I hopefully can sleep at night. I am open to trying new techniques to deal with insomnia. I already practice yoga breathing and counting backwards from 100. I really prefer not to get out of bed in the middle of the night.

Bharatanatyam Arangetram

Yesterday we attend the Bharatanatyam Arangetram of one of Rik's students. A truly over-achieving kid, she spent the last year improving her skills at classical Indian dance in order to give a recital for her Arangetram, to celebrate coming of age as a young Indian woman. Wikipedia call an Arangetram "the debut on-stage performance of a classical art student, after undertaking years of training. It is a graduation performance for any art form."

M is a remarkable dancer, having spent 15 years studying various Western forms and three years studying classical Indian dance. I was amazed at her grace, skill and stamina as she danced for three hours in a solo performance, accompanied by live music from a traditional drummer and flutist, her cousin the singer, and her guru/dance teacher. Her mother told us that M practiced six hours a day for the past months, and needed acupuncture weekly in order to keep dancing at that pace. One of her solo pieces was 35 minutes long!

M's family invited her family, friends and teachers to enjoy the Arangetram and stay for a delicious vegetarian Indian dinner after the recital. M is evidently extremely bright and dedicated to her many passions. M's fifth-grade teacher teacher said to the hundreds of people present that M is happiest when she is learning something challenging.

To protect M's privacy, I won't post any photos, but please search Arangetram to see colorful images of classical Indian dance costumes.

The whole recital was a reminded us of attending the bar or bat mitzvah of a brilliant young person who can lead the whole service in Hebrew and chant both the Torah portion and the Haftorah. Rik and I were honored to be included in his student's latest triumph!

Best breast cancer blogs

Healthline just named this one of the 24 best breast cancer blogs of 2013. I am honored to be included in this group.

My blog is listed here. Scroll through the rest of the blogs to learn a little more about what it's really like to live with breast cancer.

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!

All is good

My dear friend N reminded me today that I needed to update my blog, that people worry id they haven't heard from me for a while.

Basically, all has been fine since I last posted on July 6.  And when I feel good, I tend to be busier than not, which leaves less time for blogging.

My days have been basically the same: a doctor's appointment or other errands in the mid-morning that last until early afternoon, then a two hour nap, then dinner prep and an evening with hubby Rik.

I'm continuing to put henna on my hands and feet every other day (see Pub Med abstract). Today is Xeloda day 8 and my hands and feet are in pretty good shape. If things worsen, I imagine I will feel it by Thursday, but I am hopeful that the henna will help.

Tomorrow I start getting my Avastin and Aredia at Swedish Cancer Institute, since the Minor and James infusion center is no longer serving patients. I look forward to seeing my fave nurses at SCI!

Tomorrow starts Xeloda round 7

Today is my last day of respite from Xeloda. Tomorrow I start round 7. Having the extra week off has improved my feet and hands, but so has henna! A friend sent me this link to a 2007 PubMed abstract, claiming that henna, applied topically to the palms and feet, eases the symptoms of Hand-FootSyndrome.

I went to an Indian grocery store, bought some henna for use in body art (i.e., temporary tattoos), mixed it with water and began slathering it on my feet. They turned orange from the dye, but appear to be healing. It's only been a few days, so I don't know if the improvement is due to the henna or just time off Xeloda, but it can't hurt to try this for a couple of weeks.

Deciding that I didn't want orange palms, young friend R suggested I get henna tattoos on my palms. She volunteered to do it, but I didn't have the henna with me at the time. H and (another) R were at dinner with us last night, and they were willing to try painting my palms. Here is the result of their art:

Both hands


Right hand detail
Left hand detail

Finished product

 When the wet mush dries, it leaves behind black patterns that flake off, revealing the orange underneath.





Rik will help keep up with the painting every other night for a week or more, so that we can find out how much it helps in this next round of Xeloda.

For a how-to guide, check out Xeloda side effects: Henna Tip For Hand-Foot Syndrome. NOTE: I did not use lemon juice because of the cracks in my hands. To make the designs, we used a thicker henna base, put some in a plastic bag, and cut a very tiny corner (similar to using icing bags and tips to frost a cake).

Cancer stats

For those who are statistically minded, here is a graph of my tumor markers from 3/24/2004 to 6/18/2013. (Dr G likes to show me these graphs but I've never shared them.) Sorry if it's too small to read...

Plus here is my list of medical issues:
AR (allergic rhinitis)
Blurred vison
Bone metastases
Brain metastases
Breast cancer
Cancer-related pain
Cardiac murmur (I've had since childhood)
Cataracts, bilateral
Choroidal nevus of left eye
Drug-induced neutropenia
Dyslipidemia
Herpes zoster
Hip fracture
Hysterectomy 
Lymphedema
Osteonecrosis of jaw doe to drug
Pathologic fracture of femur (same thing as the hip fracture)
Pathologic rib fracture
Peripheral neuropathy
Post bilateral salpingo-oophorectomy
Staphylococcus carries

I can't even tell you what all these things are. (I think dyslipidemia has to do with cholesterol.) And I'm not going into my extremely long list of medications! But even with all these issues, I look forward to my 11th anniversary of living with metastatic breast cancer on August 20, 2013.

Good news on tumor markers

Sorry to be slow in reporting the good news, but I have had extremely low energy for the past ten days, which is why I haven't blogged much.

Last week's labs showed a decrease of more than 40 points in my tumor markers, now below 200 for the first time in a long time. Yay!

Dr G says my feet are "barely tolerable" but we agreed on a new regimen. I will have two weeks off between Xeloda cycles. As of today it's been one week and my feet are a little better, my hands too. I hope that an additional week without therapy will help.

The diarrhea has stopped but it lasted for about a week.

A friend came across the idea of using henna to aid in Hand-Foot Syndrome. The Pub Med article is here. Monique Doyle Spencer, who has used henna successfully to treat her HFS, posted about it in her blog, http://xelodasideeffects.blogspot.com.

The fatigue continues to knock me down. Yesterday I took and morning nap, went to my support group, and took an afternoon nap afterwards. Today I slept until 11 AM, missing a meeting, and I'm ready for another snooze now. I don't have much energy for house chores, except laundry, but Rik has picked up making dinner, shopping, and much more.

I hope this additional week off Xeloda will help restore energy as well as give me more comfort in walking. I'm getting very good use out of my bright pink UGG bedroom slippers, the only things I can tolerate walking in!

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.

What Hand-Foot Syndrome looks like

Left hand
Right hand
         
You can see every line in my hands. The redness doesn't photograph well but occurs at every fingertip and in the webbing between the fingers, especially between thumb and index fingers. This is what Hand-Foot Syndrome, a side effect of Xeloda, looks like.


Right heel: see how cracked and red? Plus a spot where skin is peeling off. Ouch!

Hand-Foot Syndrome

Xeloda's Hand-Foot Syndrome side effect has really got me these days. Today is the last day of 14 when I actually take the drugs, then I get a week off. The problem is that the pain in my palms and soles has gotten much worse over the last couple of days. It was so bad last night that I had to skip the first synagogue board meeting of the new year. I couldn't stand, couldn't walk, could hardly sit without discomfort. My hands are bad enough that it's tough to open a jar or turn off a lamp switch.

Both my palms and soles have peeling skin and all the lines that you normally don't see are visible. I have some cracks in my soles as well as some peeling skin.

H-F S happens when the chemo leaves a body. Normally that takes place via urination, but in the case of Xeloda and some other chemos, it leaves the body via the palms and soles, causing burns as though from the inside out. And the ongoing neuropathy in my toes doesn't help either.

I'll try to get Rik to take some photos so you can see what I'm talking about. In the meantime, maybe a piece of that MMJ brownie might help....



This is my right foot. Note the red areas on the heel and ball of the foot. Ouch!

Xeloda round 6 / MMJ


The fifth round of Xeloda knocked me down pretty hard. I had diarrhea and bad hand-foot syndrome for seven days, maybe longer. My hands have started to clear up as I start round 6 but I don't know how much more I can take. Tincture of opium finally cleared up 7 days of diarrhea.

I went to a medical marijuana coop yesterday and got a thorough education from the staff. Evidently some kinds of mj have more THC, the cannabinoid that makes you high, and other types have more of the cannabinoids that help relieve discomfort. I bought some salve for my feet (supposed to be helpful for neuropathy), and will use it for a week before commenting. They gave me  some "medibles:" a lollipop to suck on when pain is bad, and in lieu of a gram of MJ (I don't smoke), a 'special' brownie. 

I cut the brownie into 8 tiny pieces and tried one, even though I didn't have pain at the moment. I caught up on the ironing and went to take a nap. As soon as I lay down on the sofa I knew I was high (this is 90 minutes after eating the brownie bite). 

I felt detached from my body, had trouble focusing on a phone call, and slept hard for three hours. Basically it reminded me of morphine highs. I didn't really care for the experience but meanwhile the brownie is in the freezer. If I have nausea or other side effects, I can always take another bite.

It goes on and on

Although my diarrhea has slowed considerably since starting the tincture of opium, it's not gone away completely. My feet are still bright red and they get tender by the end of the day, and I don't have much appetite. My energy has improved, though. That's a good sign.

I'm enjoying the sunshine from my spot on the deck lounge chair, but wish I could be playing in my garden. So much still to do!

Still with the diarrhea

It started Wednesday night and hasn't stopped yet. The Lomotil prescription from my oncologist didn't help any more than the OTC Immodium.

So I called Nurse Jaque this morning and she spoke with Dr G, who gave me a prescription for tincture of opium. This helped once before when I was hospitalized for about two weeks after a poor reaction to 5FU. I've had one dose and am supposed to take it every three hours. I sure hope it helps, because given the choice, I'd rather be constipated than have diarrhea.

I was very fatigued today as well and spent a long time on the couch. Yesterday two of my best friends came over for a long visit, which turned into an impromptu dinner (rice wraps with veggies and chicken) and a large selection of incredible desserts from Bakery Nouveau. We all over-indulged in chocolate praline cake, chocolate cheesecake, twice baked almond and chocolate croissants, fruit tart, and carrot cake (burp). I felt so much better with all the company, but I was extremely tired after they left and I think it carried over to today.

The lovely sunshine today made me want to work in my garden, but wasn't a strong enough impulse to actually get me out on my hands and knees. I did sit in the hammock and read for about an hour, which was delicious. And I watered, because it's supposed to be very warm this week.

Xeloda side effects

(Don't read this if you think candid talk about cancer side effects is TMI...)

I finished the last dose of Xeloda yesterday, but the day before the diarrhea and fatigue had already begun. Yesterday I "crashed" on the way home (not literally) -- had to call my mom to have her keep me awake while driving, and yes, my car has a hands-free cell phone. As soon as I got in the door I ran to the bathroom yet again.

The diarrhea has been frequent enough, every four to six hours, that even a double dose of Immodium (the "oncology" dose) taken at each episode wasn't helping enough. Rik took care of everything while I was on the sofa. He fed and walked the dog, ordered Chinese food and then went to pick it up, fed me dinner and let me grouse to him. It's funny that even with diarrhea, I still get hungry. (I wonder, if I fasted but drank water, would the diarrhea stop sooner?)

This morning everything hit as soon as I finished breakfast -- diarrhea and crushing fatigue. I spent the entire day snuggled with the dog on the sofa, except for bathroom trips. At 2:30 PM I called Dr G's office and spoke with Nurse Jaque, who then talked with Dr G. There is a prescription for something stronger than Immodium waiting for me at the drug store. However, things may be easing up, so I may not get it.

At 5 PM I got up and went for a tour of my garden. The sun had been shining all day long, and I wanted some fresh air. I saw one fig on the fig tree, some cherries on the pie cherry trees, and MANY raspberries. There were even some Chester berry flowers already. A few potatoes left over from last year have sent up leaves. The snow peas are about two inches tall, and the red chard is growing nicely. The salad greens aren't doing too well. Maybe I should plant from starts instead of seed.... My tomatoes are a foot tall, but two of the three basil plants have died.

I'm trying to drink lots of water, I feel perkier (hence the blogging) and hope to be better tomorrow. Meanwhile no groceries, no Shabbat cooking, but Rik has walked the dog, ordered pizza for dinner and he will make the bed with fresh linen.

Back to Aredia

Dr G spoke with my dentist Dr Amy; I spoke with my orthopedist; Dr G and I conferred together and everyone agrees that my bones need more protection. So this week I started again on Aredia, a bisphosphonate that strengthens bones. Of the three major such drugs, Aredia is the oldest and the least strong. Hopefully it will not cause any issues with my osteonecrosis of the jaw and hopefully it will increase my bone strength. I first took it ten years ago when my mets were detected.

This week's infusion lasted a very long time. I arrived at 11 AM. First the nurse had to hook me up. The lab was quick and had my Avastin to me in mere minutes. That infusion lasted about 35 minutes (good to the last drop). Then we started the Aredia drip, which is supposed to take about two hours. Well, what with the whole "good to the last drop" thing, it took almost 2 1/2 hours to finish. Then it was time for my monthly double shot in the tusch of Faslodex. It was about 3:30 PM when we left and then I absolutely had to have an ice cream at Molly Moon's (earl grey with hot fudge -- yummy!). Special thanks to my friend J who sat with me the whole time, got us lunch, and kept me entertained.

I will continue with all three drugs once a month. On the other hand, the Avastin is only every other week. Hopefully adding in the Aredia will make a difference in my bone health.

I will continue on the Xeloda for the time being.

A spring bouquet from our garden!

Slow blogging these days

It seems to me that the better I feel, the less often I blog. I've felt pretty good since getting Dr G's word that all seems stable. Here's the report from last week's visit.

At my request, Dr G is putting me back on the standard dose of Xeloda starting this week. I figure, if I felt good this last time, maybe I could tolerate the standard dose better now.

I've recently noticed some arthritis in my thumbs. It's not very painful, but noticeable, especially when I use my hands to open a jar, etc. Dr G told me that although most cancer drugs actually help arthritis improve, evidently aromatase inhibitors make it worse. So I will stop the Aromasin for the next few weeks and we'll see if that helps the arthritis.

My insomnia has worsened due to the neuropathy in my feet. I feel the stinging/numbness/pain every moment of every day, but it doesn't usually bother me while I am awake. As soon as I get into bed, though, I lie awake for hours listening to my feet "talk" to me. By the time I take an Ativan it's often 2 AM, Even if I don't take an Ativan, I don't fall asleep until 2:00 or later. Both my friend J and Dr G recommended the same thing: take the Ativan earlier in the evening. So I am trying to take it at 9 PM but I don't have any meaningful data to report yet.

I am probably going to start taking the bisphosphonate Aredia again in two weeks. Dr G still needs to connect with my dentist, but I sure they will talk soon. My bones need the extra protection, and that may outweigh the risk of increased ONJ. Dr G will order the Aredia and Avastin to be given one after the other so my time in the chemo chair can be all on the same day for two hours instead of one.


Another loss

I just heard that another friend of mine has died of metastatic breast cancer. A young woman in her 30s, we became friendly when she was originally diagnosed and then when her disease spread. I had recently referred her to Dr G when she became disenchanted with her previous oncology care. She had extensive bone and brain mets, possibly lung and liver as well. I had tried to check in with her just this past week, but didn't realize that her health had failed so rapidly.

This is why breast caner is a tragedy. Here was a lovely young woman who hardly had a chance to start her adult life when her fast-growing cancer hit. She had to retire from work, could not continue the Jewish education she loved so dearly, and moved into a group house when she could no longer live on her own.

I wish I could say more, but want to protect her family's privacy. Nonetheless, I will try to go to her funeral and the shiva minyan tomorrow.

May her memory be for a blessing to all who knew her.

Interesting NYT article

In last Sunday's New York Times article, Our Feel-Good War on Breast Cancer, author Peggy Orenstein discusses a number of issues related to breast cancer, particularly the need for mammography. She also said the following:
According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period. (Bold type my emphasis.)
I've been saying this for years, Instead of raising awareness (as if anyone in the US was somehow not yet aware of breast cancer), we should be spending money on research to treat and cure.

As Orentein writes, "Breast cancer in your breast doesn't kill you." It's metastasis to organs that kills about 40,000 women a year.

Orenstein concludes:
It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.

Scan stable/improved

My recent CT scan shows improved and stable disease in my liver - yay! There is some concern about my bones, especially since my rib fractured just before we went to Hawai'i. I will see my orthopedist tomorrow and get his opinion on what to do about the fracture, if I should go back on a bisphosphonate, and whether we would get more information from a bone scan.

Dr G is going to talk with both Dr Flugstad and Dr Winston, my specialty dentist, about the potential impact of Aredia on my jaw. The oldest of the bisphosphonates and actually the least powerful (we looked it up today), Aredia might be a good choice, but all the docs have to weigh in.

More news tomorrow!

Aloha oe

Yes, we were in Hawai'i this past week, so my talk of "taking it easy" was really taking it easy! We spent three nights on the Big Island and saw the Kilauea crater in detail. Then we went on to O'ahu for four nights in Waikiki. We climbed Diamond Head (elevation 760 feet!), swam in the ocean, took photos in Chinatown, and ate extremely well every day. I even took a hula lesson!

Bathing beauty

My first lei


Rik does his camera thing



View from Waikiki Hyatt to Diamond Head 



Kilauea crater lets off steam


View from the top of Diamond Head





Rib seems okay

My rib doesn't hurt nearly as much as those first two days. Maybe it's a very small fracture after all. I'm still trying to take it easy and have managed to at least lay down if not sleep every afternoon. Had a little diarrhea for no apparent reason but Immodium is taking care of it.

A must-read

This is a wonderful piece by Roger Ebert, published at www.salon.com. Click here for the full article.

I do not fear death

I will pass away sooner than most people who read this, but that doesn't shake my sense of wonder and joy





Roger Ebert was always a great friend of Salon's. We're deeply saddened byreports of his death, and are re-printing this essay, from his book "Life Itself: A Memoir," which we think fans will take particular comfort in reading now.
I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear. I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. I am grateful for the gifts of intelligence, love, wonder and laughter. You can’t say it wasn’t interesting. My lifetime’s memories are what I have brought home from the trip. I will require them for eternity no more than that little souvenir of the Eiffel Tower I brought home from Paris.
I don’t expect to die anytime soon. But it could happen this moment, while I am writing. I was talking the other day with Jim Toback, a friend of 35 years, and the conversation turned to our deaths, as it always does. “Ask someone how they feel about death,” he said, “and they’ll tell you everyone’s gonna die. Ask them, In the next 30 seconds? No, no, no, that’s not gonna happen. How about this afternoon? No. What you’re really asking them to admit is, Oh my God, I don’t really exist. I might be gone at any given second.”
Me too, but I hope not. I have plans. Still, illness led me resolutely toward the contemplation of death. That led me to the subject of evolution, that most consoling of all the sciences, and I became engulfed on my blog in unforeseen discussions about God, the afterlife, religion, theory of evolution, intelligent design, reincarnation, the nature of reality, what came before the big bang, what waits after the end, the nature of intelligence, the reality of the self, death, death, death.....

Fractured rib

Tuesday night's painful spot on my right side turns out to be a fractured rib. Dr G says I can tape my rib if it hurts more so I have the duct tape at the ready (his recommendation!).


I probably won't heal from this as easily as most people without cancer, so Dr G will talk with my orthopod and a thoracic surgeon to see if I will need surgery. I do have a CT scheduled soon.

I have no idea how my rib broke. Maybe Bob the dog jumped on me one too many times?

I plan to lay low for a bit and not stress my side, so don't be surprised to see fewer posts in the next week.