Dec 26, 2016
Seattle Die In photos
Sixty-four people came to our Seattle Die In yesterday - representing the 64 Washingtonians who die of metastatic breast cancer every month. Here are some photos Rik took.
Dec 19, 2016
Metastatic breast cancer awareness day
Yes, out of all of Pinktober and the entire year, they give us ONE DAY. In honor of that one day, I want to quote from my friend Mandi, author of the blog Darn Good Lemonade
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5 Things Not to Say to Someone With Metastatic Breast Cancer
Posted By Mandi on Oct 13, 2015 | 1 Comment
In honor of metastatic breast cancer awareness day (October 13), here are 5 things not to ask someone with metastatic breast cancer:
1. When will you be done with treatment?
The answer is never. We will be in treatment until we die. Even if the magical NED (no evidence of disease) status comes. Once you have stage IV breast cancer you have circulating cancer cells in your bloodstream that have to be kept in check. The average lifespan is 3 years after metastatic diagnosis.
2. I thought breast cancer had a cure?
You will see 99% and 95% cure rate stats floating around. Those stats say that with early stage detection, 95-99% of women will leave past 5 YEARS. Not live forever. read the fine print. I hate this stat. 20% of women with stage IV live past 5 years after diagnosis of stage IV. 5 years past my stage IIB diagnosis is coming up on December 30, 2015. I am not even going to give you stats that involve brain metastasis, we are already pretty upset at my house these days without stirring that pot. Let’s just hope I make it to that 5 year mark, just need 2 more months eh?
3. But you look healthy?
When I won an award that required I be in active treatment for breast cancer, the other woman there with me happened to be early stage and acted fairly upset that I was there with all of my hair (little did she know 5 minutes after shooting the news spot I had to run and get radiation to my spine). It really upset me, I felt like she seemed to think I was faking my illness and it also concerned me that she knew nothing about metastatic breast cancer (spine radiation was one of the worst things I have ever been through by the way). Just because someone doesn’t looks sick on the outside, doesn’t mean they aren’t sick. This goes for many other diseases that are called “invisible illnesses.” I know sometimes people mean well when they point that out, but we don’t exactly want to look sick and it isn’t a gauge on how we are really feeling.
4. But you got the “good cancer?”
HA! All cancer sucks. Yes, some people live longer with some cancers. Some cancers are nearly curable. They all require crappy treatment and side effects. Let’s just cure ALL cancers and I seriously want to hear how cancer in my spine, lungs and brain is the good cancer, mmkay?
5. Men don’t have breasts, they can’t get breast cancer?
Men do get breast cancer. They actually have the inner-workings of a breast that just don’t actually become them because of hormones. That whole XY chromosome thing. I don’t need to teach you biology, but men get breast cancer and they get metastatic breast cancer. Don’t forget them.
Jill's news:
I saw Dr G today and Monday's CT was "not favorable." I have new mets in my liver and lungs.The lung mets have come and gone over the years and are particularly tiny (5 mm each), so I guess I'm not going to worry about them much.
Dr G wants to increase my dose of carboplatin and add Alimta (pemetrexed). Nurse Jacque said these are given once every three weeks, with vitamin B12 for the Alimta. That shot had a very tiny needle. I'll know more once Premera has approved these chemos. Alimta crosses the blood-brain barrier and has low toxicity, so it's very appealing. We also discussed ixabepilone, cytoxan and a new therapy called abemaciclib.
He'll get me in to see a radiation oncologist to treat my skin mets and enlarged lymph node. Dr G will also try to get me in to see Dr Julie Gralow at UW for a second opinion. She's a widely renowned oncologist who travels around the world and is most likely to know about new research. But since she travels so much, it may be a long time before I get in to see her.
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Dec 12, 2016
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.
Update Monday
I am recovering bit by bit.
The weekend was full of antibiotics and friends. Today I learned that I most likely have two different infections. One is coliform, the bacteria that can cause E. coli. You hear about kids eating hamburgers filled with fecal bacteria. But we all harbor some kind of E. coli and it takes just the right thing to trigger your own body's stuff. I think I got that right.
Dr infectious disease named the second infection in the early morning and I can't remember it now. It had something to do with water/blood bacteria.
I've had more IV antibiotics today but if Friday's and Saturday's cultures come back growing the same thing as Thursday's, I can move to an oral antibiotic and go home. So I hope to be here until tomorrow. As you know, nothing is certain when you're inpatient at the hospital.
Dec 6, 2016
Therapists are not like oncologists.
Therapists are not like oncologists.
Imagine an oncologist who has no idea what the latest treatment is. Imagine now that they are trying to cover their butts. "You have cancer, but I have something that works in my patients." "Something that works in your patients?" Even in your distress something seems odd about that statement. "Does it work in all patients or just in yours?" Its one of those questions you think twice about asking an MD because it smacks of sarcasm and hints a possible incompetence. But it is exactly the most rational question.
Of course, of an oncologist you'd not have to ask this question because oncologists are required by law to use the most effective treatment. If they do not do the latest and greatest they can get sued. Into oblivion.
People die of cancer. People generally don't die of bad therapy.
Now imagine your therapists says this... "You've had a stroke but I have something that works in my patients." "Does it work in all patients or just in yours?" There are 2 possible answers:
1. I have a lot of clinical experience, and in my experience it works.
2. Actually, its not ME saying it works in MY patients, but the research says it works in patients with your sequalae (symptoms).
I feel safer with #2.
#1 could have an unspoken "...but I've never really collected data or analyzed data or compared it to a control group or blinded myself during your measurement, or done anything else that science does to make sure that my data is "clean"."
"Does it work in all patients or just in yours?" is really the question, "Is there research that says it works?"
Encourage therapists to have a look at their diploma. It'll say, clear as day "Associate's of applied SCIENCE," "Bachelors of SCIENCE," "Masters of SCIENCE," and so on. The the notion that they base treatment solely on clinical experience is dangerous. One of the biggest determinants of recovery is the therapist sitting in front of you. Do yourself a favor, and do them a favor: Call them on the evidence.
Dec 5, 2016
Thanksgiving
I really don't have anything interesting to say about Thanksgiving. You'd think I would, but it seems maudlin to talk about why am I still alive after watching so many friends die of their cancers. So I'm turning over this post to my wonderful husband Rik, who wrote it November 22, 2015 on his Facebook page.
Why I am grateful this Thanksgiving.
Great article from the New York Times today brought it all home. Adding some personal reasons too!
Grateful for Jill being in my life for 21 plus years, and her having the best team of medical care in the world over the last 16 years to manage her Breast Cancer and mets disease, but particularly the last month as she has been hospitalized with two infections, continued chemo, almost finished radiation on four spots and successfully managed Gamma Knife to her brain.
Also grateful for the support of my community of friends, neighbors, and synagogue members who have brought us meals, rides for Jill, company, and of course my colleagues at Roosevelt High for all the support in rides, hugs, good wishes, coffee, coverage of classes for me when needed, and giving me lots of slack, and my students who always are wonderful caring human beings who get that school assignments are not the most important things in life.
See attached photos for Jill in action making the cancer go away!
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| Jill wears the full gamma knife gear |
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| "What, no second breakfast?!" |
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| And at the conclusion of radiation to four separate spots. That face mask was awful and didn't even look like her. |
Nov 28, 2016
Saebo in the news...
I'm a fan of one of this blog's advertisers, Saebo. The two guys who started the company are brothers, both occupational therapists. (Find another set of brothers that are both occupational therapists and I'll send you a free copy of my book.) I like the culture that Saebo brings to stroke recovery. Everything they make has a commonsensical perspective engineered in.
Saebo makes the SaeboStretch. Unlike static splints which hold the hand in a static position, the SaeboStretch allows the fingers to flex when they need to (often to protect the joints of the fingers). The 'Stretch then slowly pushes the fingers back to the desired position.
Link here.
And, as it turns out, Gabrielle Giffords sports one!
Nov 21, 2016
Music school
Yesterday we arrived at the music high school T attended. It's in the mountains of Kotel, a small village in the foothills.
After we arrived I was exhausted from the earlier part of the day: shopping, lunch in an outdoor cafe and hot, hot sun. A shower and short nap helped and I was able to attend the group lesson. We learned a really beautiful "Happy Song."
Our driver had a mandated 24hour break, so most of walked down the winding road to a lovely restaurant. We sat outdoors by a waterfall. A delightful setting. Sadly the menu was confusing.
M thought she ordered sea scallops, French fries and hot tea. What she got was a bottle of cold iced tea, Saratoga-style potato chips (cut thin and fried but with a soft potato center) and pork scallopiini. But we laughed it off and it made a funny photo.
We returned late, after midnight, and I barely woke up in time for coffee and the special Kotel bread - so yummy! Then I had a private lesson with one of the singers working with Dunava.
Lunch is in an hour and I am going to nap until then.
J and I at a scenic view near Kotel
Nov 14, 2016
Radiation etc.
It's been a whirlwind week of doctors but now I know what to expect through the next several weeks. If you remember, I told my mets many years ago that if they were quiet, they could live with me, but if they got noisy, I'd bring up the big treatments. So here we go!
1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!
2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.
3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.
4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.
5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam. He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).
6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.
7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.
That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!
1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!
2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.
3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.
4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.
5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam. He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).
6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.
7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.
That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!
Nov 8, 2016
Home sweet home
Yay! Swedish sent me home again this afternoon.
Infectious Disease Dr said I have 2 bacterial infections - klebsialla (coliform, or a kind of E. coli, which everyone carries) and serratia (water based). Who knows how I got them or why. I'm getting oral antibiotic Levaquin now, once every 24 hours, for five days. Don't click on the links unless you enjoy being grossed out or like medical stuff.
My friend G told me the following: "Serratia marcescens belongs the family Enterobacteriaceae, which includes E.coli and Klebsiella pneumoniae. They are both associated with nosocomial infections (hospital acquired). Serratia in particular is associated with catheter-associated bacteremia."
Infectious Disease Dr said I have 2 bacterial infections - klebsialla (coliform, or a kind of E. coli, which everyone carries) and serratia (water based). Who knows how I got them or why. I'm getting oral antibiotic Levaquin now, once every 24 hours, for five days. Don't click on the links unless you enjoy being grossed out or like medical stuff.
My friend G told me the following: "Serratia marcescens belongs the family Enterobacteriaceae, which includes E.coli and Klebsiella pneumoniae. They are both associated with nosocomial infections (hospital acquired). Serratia in particular is associated with catheter-associated bacteremia."
So it was correct to presume that my PICC line was the cause of these infections. And I have been prone to infections for several years, since my early onset breast cancer in 1999 (I developed toxic shock syndrome in the drain placed after my lumpectomy). This shouldn't have surprised anyone. And yet it did. Even though I've been hospitalized several times over the years for infections.
But I am healthy now and ready to pick up life from where it veered last week. Thank you Swedish Medical Center's phenomenal staff!
Nov 7, 2016
On to November
Pinktober has ended and I personally am glad. Although I figured out the best way as a metster to "celebrate" it (by spending time in the hospital), I am so glad that the end of pink products and pink washing may be over. To learn more about pink washing, go to Think Before You Pink.
A friend told me on Saturday that it may take a week to recover for each day inpatient. Since I was at Swedish for six days, I am going to try to take things easy this month.
Last week I saw the brain radiation oncologist and she says she can treat my multiple brain mets with gamma knife radio surgery. She did this once before when I had only four bran mets. Now I have more than twenty but she is confident.
Today I see the radiation oncologist. Tomorrow I see the orthopedist, just in case something in my shoulder might break. I have a new met(s) there, and on my lowest right rib. I don't want to risk a fracture when I turn over while sleeping or other such event.
Today's rad onc will look at the left shoulder, right rib, enlarged lymph node on my neck and my two skin mets. I hope he can treat them all since I am so tired of complaining about the last three items for months and not really being heard.
When I have more to report I will check in. I might wait until I know about everything.
A friend told me on Saturday that it may take a week to recover for each day inpatient. Since I was at Swedish for six days, I am going to try to take things easy this month.
Last week I saw the brain radiation oncologist and she says she can treat my multiple brain mets with gamma knife radio surgery. She did this once before when I had only four bran mets. Now I have more than twenty but she is confident.
Today I see the radiation oncologist. Tomorrow I see the orthopedist, just in case something in my shoulder might break. I have a new met(s) there, and on my lowest right rib. I don't want to risk a fracture when I turn over while sleeping or other such event.
Today's rad onc will look at the left shoulder, right rib, enlarged lymph node on my neck and my two skin mets. I hope he can treat them all since I am so tired of complaining about the last three items for months and not really being heard.
When I have more to report I will check in. I might wait until I know about everything.
Oct 24, 2016
XRT
Today ends the first full week of two for radiation to four spots, otherwise known as XRT (X-ray therapy). I was so fatigued earlier in the week, but I realized this morning that I had tried to squeeze in a blood draw and oncologist appointment on Tuesday and Wednesday, with radiation separated by more than an hour. No wonder I was so pooped.
Yesterday was much more pleasant. I got up early, ate and showered, crashed for a bit and went to XRT. Today the same but I haven't crashed or showered yet. Yesterday's dog walker was a wonderful young woman who instantly fell in love with the pooches, and they with her.
Our synagogue has been providing help through the Mitzvah Corps, a neighborhood group that supports families in need - whether it's a new baby, a death or illness in the family, etc. So far we've had daily dog walkers (and I know not all these people really like walking dogs, but they want to help) and delicious meals twice this week. It's been so wonderful to have this support. It helped us thirteen years ago when I broke my leg and needed assistance with everything, including getting my own lunch. I fondly remember one friend from Radost who showed up with her mop, bucket and vacuum cleaner to clean our house! I've tried to pay it forward to other families over the years, and now the circle comes around again.
The XRT is first to the skin met on my head, which is doing really well on it, although it will leave a permanent bald spot. I'll have to have a comb over when I grow enough hair. Then to the skin met on my chest, which is bleeding freely when I remove the bandage but which I hope is also healing on this regimen. Then they zap my shoulder and neck lymph node combined. Hard to tell on how well this one is working, because it still hurts. Last is to my right lowest rib, which might have fractured when Bob the dog jumped on it (this happened once before) or is just a new bone met. At any rate, it hurt enough to warrant treatment. The radiation techs are terrific gentle men, who treat with me with dignity and delicacy, worry when I stain my shirt with blood, and actually pick me up and place me down on the gurney to put me in the proper position.
Dr Eulau the wonderful radiation oncologist has actually treated me four times over the years, from my original diagnosis, my mets diagnosis, my ulnae, and now. He is a fabulous, caring physician and I wouldn't have asked anyone else to be on my dream team.
Now it's time for a shower, clothing and more laundry. I actually feel well enough to do all this today!
Yesterday was much more pleasant. I got up early, ate and showered, crashed for a bit and went to XRT. Today the same but I haven't crashed or showered yet. Yesterday's dog walker was a wonderful young woman who instantly fell in love with the pooches, and they with her.
Our synagogue has been providing help through the Mitzvah Corps, a neighborhood group that supports families in need - whether it's a new baby, a death or illness in the family, etc. So far we've had daily dog walkers (and I know not all these people really like walking dogs, but they want to help) and delicious meals twice this week. It's been so wonderful to have this support. It helped us thirteen years ago when I broke my leg and needed assistance with everything, including getting my own lunch. I fondly remember one friend from Radost who showed up with her mop, bucket and vacuum cleaner to clean our house! I've tried to pay it forward to other families over the years, and now the circle comes around again.
The XRT is first to the skin met on my head, which is doing really well on it, although it will leave a permanent bald spot. I'll have to have a comb over when I grow enough hair. Then to the skin met on my chest, which is bleeding freely when I remove the bandage but which I hope is also healing on this regimen. Then they zap my shoulder and neck lymph node combined. Hard to tell on how well this one is working, because it still hurts. Last is to my right lowest rib, which might have fractured when Bob the dog jumped on it (this happened once before) or is just a new bone met. At any rate, it hurt enough to warrant treatment. The radiation techs are terrific gentle men, who treat with me with dignity and delicacy, worry when I stain my shirt with blood, and actually pick me up and place me down on the gurney to put me in the proper position.
Dr Eulau the wonderful radiation oncologist has actually treated me four times over the years, from my original diagnosis, my mets diagnosis, my ulnae, and now. He is a fabulous, caring physician and I wouldn't have asked anyone else to be on my dream team.
Now it's time for a shower, clothing and more laundry. I actually feel well enough to do all this today!
Oct 10, 2016
Chanukah
Last night our holiday of Chanukah began. It's about "this" important in terms of Jewish observance. Because it's a winter festival of lights and can fall very close to Christmas, the holiday observed by our government and so many people worldwide, Chanukah has come to take on increased importance in the USA and other Western countries.
That said, how can you not love a holiday whose main observance, after lighting candles (which we do on most Jewish holidays), is cooking and eating foods fried in oil? Me -- I never met a fried potato I didn't like.
Last night I did my usual, annual routine. I made my dad's recipe for latkes (potato pancakes) while listening to Debbie Friedman's album Not by Might, Not by Power, singing as loudly as possible and dancing around the kitchen.
That said, how can you not love a holiday whose main observance, after lighting candles (which we do on most Jewish holidays), is cooking and eating foods fried in oil? Me -- I never met a fried potato I didn't like.
Last night I did my usual, annual routine. I made my dad's recipe for latkes (potato pancakes) while listening to Debbie Friedman's album Not by Might, Not by Power, singing as loudly as possible and dancing around the kitchen.
While the latkes were cooking in batches, I made the Joy of Cooking's vegan orange cake, which comes together quickly, bakes in 30 minutes, and doesn't require more eggs or even much oil. I use half the sugar called for and cut the orange juice with half lemon juice, so that it's not as sweet as the original recipe. I spread chocolate chips over half the top as the cake cooled so Rik and I would both enjoy part of it.
I pulled from the fridge the rest of the cranberry chutney I made for Thanksgiving, some salad, apple sauce and Greek yogurt (didn't have sour cream). After frying so many latkes that the house stank from oil, we ate latkes and salad for dinner until we were stuffed. Rik ate six and I ate four. Shouldn't have had that last one (urp).
I pulled from the fridge the rest of the cranberry chutney I made for Thanksgiving, some salad, apple sauce and Greek yogurt (didn't have sour cream). After frying so many latkes that the house stank from oil, we ate latkes and salad for dinner until we were stuffed. Rik ate six and I ate four. Shouldn't have had that last one (urp).
Now that's what I call a holiday!
Again I will post my adaptation of my father's latke recipe. As my mom and I recalled, Dad would stand at the stove frying while we three sat at the kitchen table. He'd serve up a plate of latkes, start frying another batch, and eat his while standing up. No wonder both his daughters became master latke-makers!
Jill's take on Shellie's Latkes
2 pounds Yukon Gold or russet potatoes, peeled
2 onions, grated
3 large eggs, lightly beaten
Salt and freshly ground black pepper to taste
1/4 cup matzo meal or flour
Avocado, canola or other high heat oil, mixed with olive oil for frying
Applesauce and/or sour cream for garnish
1. Grate the potatoes by hand using the tiny holes in the grater. Or in a food processor use the thinnest grating blade, then whirl with the S blade to turn potatoes from grated strips into more of a mush. Grate the onions in the same way. Scoop up 1/4 cup of potatoes at a time with your hands and squeeze out and discard the excess liquid, then put in a colander and add the onions, eggs, matzo meal or flour, salt, and pepper, making sure that everything is very well blended. Let batter drain in the large colander over a mixing bowl while you fry.
2. Heat about 1/4 inch of oil in a 10-inch pan over high heat. Scoop latkes using a tablespoon and add them to the hot oil. Don't crowd the pan -- four at a time is plenty. Be careful not to burn yourself! Cook latkes for about 5 minutes per side. Drain on a rack placed in a baking sheet with one inch sides (do not use paper towels), and keep warm in a 250 degree oven. Or eat standing up, while they're fresh from the oil.
3. Serve with applesauce at a meat meal or with sour cream or Greek style yogurt at a dairy meal.
PS You can freeze fried latkes in a single layer on a baking sheet. Transfer to a freezer bag or other container. When ready to eat latkes again, reheat in a low oven for about 20 minutes or until warm. If you make them in advance this way, your house doesn't smell like fried potatoes or stale oil when the guests arrive. Thanks to my sister for this great tip!
 |
| The first three latkes! |
Again I will post my adaptation of my father's latke recipe. As my mom and I recalled, Dad would stand at the stove frying while we three sat at the kitchen table. He'd serve up a plate of latkes, start frying another batch, and eat his while standing up. No wonder both his daughters became master latke-makers!
Jill's take on Shellie's Latkes
2 pounds Yukon Gold or russet potatoes, peeled
2 onions, grated
3 large eggs, lightly beaten
Salt and freshly ground black pepper to taste
1/4 cup matzo meal or flour
Avocado, canola or other high heat oil, mixed with olive oil for frying
Applesauce and/or sour cream for garnish
1. Grate the potatoes by hand using the tiny holes in the grater. Or in a food processor use the thinnest grating blade, then whirl with the S blade to turn potatoes from grated strips into more of a mush. Grate the onions in the same way. Scoop up 1/4 cup of potatoes at a time with your hands and squeeze out and discard the excess liquid, then put in a colander and add the onions, eggs, matzo meal or flour, salt, and pepper, making sure that everything is very well blended. Let batter drain in the large colander over a mixing bowl while you fry.
2. Heat about 1/4 inch of oil in a 10-inch pan over high heat. Scoop latkes using a tablespoon and add them to the hot oil. Don't crowd the pan -- four at a time is plenty. Be careful not to burn yourself! Cook latkes for about 5 minutes per side. Drain on a rack placed in a baking sheet with one inch sides (do not use paper towels), and keep warm in a 250 degree oven. Or eat standing up, while they're fresh from the oil.
3. Serve with applesauce at a meat meal or with sour cream or Greek style yogurt at a dairy meal.
PS You can freeze fried latkes in a single layer on a baking sheet. Transfer to a freezer bag or other container. When ready to eat latkes again, reheat in a low oven for about 20 minutes or until warm. If you make them in advance this way, your house doesn't smell like fried potatoes or stale oil when the guests arrive. Thanks to my sister for this great tip!
Oct 4, 2016
A Story Half Told: Life with Metastatic Cancer
If you have metastatic cancer, or you care for someone who does, you're free on Sunday and you live in the greater Seattle area, please join us at Greetings Gilda's Club Seattle.
When: Sunday, December 13 2-3:30PM
Where: Gilda's Club Seattle 1400 Broadway Seattle, WA
Please RSVP by emailing info@gildasclubseattle.org or calling 206-709-1400.
For more information, see attached flyer. We hope to see you there!
Oct 3, 2016
Stress
I hate stress. I haven't been getting a lot of sleep recently. Why? Stress. We are house hunting. We actually have sold our house and have just over two months, preferably less, before we have to be out of our house. And today starts craft show season where I am busy every weekend now through mid December.
And house hunting is no fun. We sold our house quite quickly. We haven't found a house to buy. Well we have made several offers - we lost the first tone because they misled us and let us think they had other offers in. Then they wanted to keep taking other offers until we sold our house. The next house had an accepted offer in by the time we got ours in - two days after it went on the market. The third house seller actually went with another offer, even though we think ours was higher.
Last weekend we thought we found 'the' house. We made an offer which was accepted. We had a home inspection and found that house has so many problems its barely livable. The minor stuff mold in the attic, failing lolly columns which support the first floor, and a completely rotted out back wall that needs to be replaced. All are significant safety issues so we said no. (And now the house is back on the market with no mention of any of the issues.)
Yesterday we found another house. We are making an offer. We have our fingers crossed. And the stress goes on.
At least its not medical stress. Well there is some of that as well as my knee doctor has told me I am not a good candidate for ACL repair surgery because of my RA. We are in 'wait and see' mode for another few months.
And house hunting is no fun. We sold our house quite quickly. We haven't found a house to buy. Well we have made several offers - we lost the first tone because they misled us and let us think they had other offers in. Then they wanted to keep taking other offers until we sold our house. The next house had an accepted offer in by the time we got ours in - two days after it went on the market. The third house seller actually went with another offer, even though we think ours was higher.
Last weekend we thought we found 'the' house. We made an offer which was accepted. We had a home inspection and found that house has so many problems its barely livable. The minor stuff mold in the attic, failing lolly columns which support the first floor, and a completely rotted out back wall that needs to be replaced. All are significant safety issues so we said no. (And now the house is back on the market with no mention of any of the issues.)
Yesterday we found another house. We are making an offer. We have our fingers crossed. And the stress goes on.
At least its not medical stress. Well there is some of that as well as my knee doctor has told me I am not a good candidate for ACL repair surgery because of my RA. We are in 'wait and see' mode for another few months.
Sep 26, 2016
Another 'Upside' to Breast Cancer Treatment
Its not enough that breast cancer treatment consists of slashing, poisoning and burning. These leave a physical and emotional toll that can include additional ailments, including new cancers. One of them is nice rare one without much available research and a high mortality rate - angiosarcoma. Please read and enjoy the following:
"Physicians have long noticed that breast cancer patients who have had surgery or radiation therapy have an heightened risk of developing angiosarcoma, a rare type of cancer that originates in the lining of the blood vessels.
Now, researchers at Loyola University Health System in Maywood, Ill., have focused in on a finding that could be a possible precursor to angiosarcoma. With further research this finding could lead to more definitive markers that could predict those who are most likely to develop the disease. Angiosarcoma is a malignant, rapidly growing, highly invasive type of cancer that has a high mortality rate.
In a case study published in the Journal of the American Academy of Dermatology, researchers at Loyola identified what at first appeared to be only a tiny bruise on the right breast of a 63-year-old woman. Four years prior the woman had had a lumpectomy in the breast and radiation therapy for cancer. She had also had chemotherapy and hormone therapy.
“Normally, when you see a benign-appearing vascular lesion, you probably would pass it up,” said Dr. Joshua Mandrell, a dermatologist who co-authored the report. “But given her history, we biopsied it and it did show that it was an atypical vascular lesion.”
Atypical vascular lesions are abnormal vascular growths that are thought to form in response to trauma, such as that caused by surgery and radiation therapy, according to the study. The lesions are so rare that few medical professionals are aware of their existence. There are also no well defined prognosis factors or treatment guidelines for them.
“Atypical vascular lesions are not completely benign blood vessel growths and are not angiosarcoma. They are right in the middle. They are atypical enough that we suggest in our study that they warrant treatment,” Mandrell said. “The thought is that they could potentially become angiosarcomas.”
How lovely is that? When I searched on cancer.org's website for angiosarcoma, this is what I found:
"This form of cancer starts in cells that line blood vessels or lymph vessels. It rarely occurs in the breasts. When it does, it usually develops as a complication of previous radiation treatments. This is an extremely rare complication of breast radiation therapy that can develop about 5 to 10 years after radiation. Angiosarcoma can also occur in the arms of women who develop lymphedema as a result of lymph node surgery or radiation therapy to treat breast cancer. (For information on lymphedema, see the section "How is breast cancer treated?") These cancers tend to grow and spread quickly. Treatment is generally the same as for other sarcomas. See Sarcoma: Adult Soft Tissue Cancer."
That was all that was listed. And when I went to the link for sarcoma, it was not even mentioned. Nice.
I can't wait. I had radiation and have lymphedema. I'll just add this to my list of crap to look out for. And if its related to cancer, it is all crap.
"Physicians have long noticed that breast cancer patients who have had surgery or radiation therapy have an heightened risk of developing angiosarcoma, a rare type of cancer that originates in the lining of the blood vessels.
Now, researchers at Loyola University Health System in Maywood, Ill., have focused in on a finding that could be a possible precursor to angiosarcoma. With further research this finding could lead to more definitive markers that could predict those who are most likely to develop the disease. Angiosarcoma is a malignant, rapidly growing, highly invasive type of cancer that has a high mortality rate.
In a case study published in the Journal of the American Academy of Dermatology, researchers at Loyola identified what at first appeared to be only a tiny bruise on the right breast of a 63-year-old woman. Four years prior the woman had had a lumpectomy in the breast and radiation therapy for cancer. She had also had chemotherapy and hormone therapy.
“Normally, when you see a benign-appearing vascular lesion, you probably would pass it up,” said Dr. Joshua Mandrell, a dermatologist who co-authored the report. “But given her history, we biopsied it and it did show that it was an atypical vascular lesion.”
Atypical vascular lesions are abnormal vascular growths that are thought to form in response to trauma, such as that caused by surgery and radiation therapy, according to the study. The lesions are so rare that few medical professionals are aware of their existence. There are also no well defined prognosis factors or treatment guidelines for them.
“Atypical vascular lesions are not completely benign blood vessel growths and are not angiosarcoma. They are right in the middle. They are atypical enough that we suggest in our study that they warrant treatment,” Mandrell said. “The thought is that they could potentially become angiosarcomas.”
How lovely is that? When I searched on cancer.org's website for angiosarcoma, this is what I found:
"This form of cancer starts in cells that line blood vessels or lymph vessels. It rarely occurs in the breasts. When it does, it usually develops as a complication of previous radiation treatments. This is an extremely rare complication of breast radiation therapy that can develop about 5 to 10 years after radiation. Angiosarcoma can also occur in the arms of women who develop lymphedema as a result of lymph node surgery or radiation therapy to treat breast cancer. (For information on lymphedema, see the section "How is breast cancer treated?") These cancers tend to grow and spread quickly. Treatment is generally the same as for other sarcomas. See Sarcoma: Adult Soft Tissue Cancer."
That was all that was listed. And when I went to the link for sarcoma, it was not even mentioned. Nice.
I can't wait. I had radiation and have lymphedema. I'll just add this to my list of crap to look out for. And if its related to cancer, it is all crap.
Sep 19, 2016
Cutting the last cord
What happens after all the treatment? Cancer patients are diagnosed and then get all kinds of care to make sure it doesn't come back (which is our greatest fear).
At the end of treatment, all of a sudden this constant care by all kinds of medical people to check you over and reassure you that it hasn't come back comes to a screeching halt. At this point, the doctors all say come back in 3, 6, or 12 months and we will check again. And the patient says 'whhhaaattt? But what if it comes back? Who will know?'
This is the most frequent time for patients to wig out and require emotional support from a support group or therapist to make sure they don't go off the deep end. It is a very stressful time. You are alone with the little thoughts in the middle of the night - what if it comes back?
With breast cancer, its a little different. You get surgery and chemotherapy. Medical personnel is all around to be aware of a single sneeze. Then some get radiation as well where you are seen daily for weeks on end. At the end of this time most go on to hormonal therapy - Tamoxifen, Femara, Aromasin, or the other one who's name I can't remember right now. That lasts for five to ten years. And then finally you are on your own and you see your oncologist maybe once a year.
I went through this a long time ago when I had thyroid cancer. At the end of about six months of doctor appointments I was left to cope on my own. And I can tell you in some ways it really sucked big time. And left me with some strong emotional issues that took a long time to recover from.
When I was diagnosed with breast cancer, I told myself I was not going to let cancer suck any happiness out of my life and went to support groups before my first surgery. Then I got a therapist at the end of radiation as well. But I was still on hormonal medication - 2 years of Tamoxifen and then Femara.
Yesterday I went to see my oncologist and she said it was time for me to end Femara - that last little pill to help prevent it from coming back. She said she had mentioned this at my visit last year but since I can't remember last week, never mind last year, I had no memory of this.
Basically while there is lots of data on the benefits of staying on Tamoxifen for ten years there is no research now to prove there is any benefit to staying on Femara or other aromatase inhibitors for longer than five years. There are ongoing studies on this but no results yet. This research will take years because they are following women after five years of Femara.
My oncologist brought up the joint pain issues I have. She said that one of the side effects of Femara was joint pain. I couldn't tell you if I am experiencing this or not. All I can remember is after chemo, I went on Tamoxifen and started feeling better because I wasn't in chemo any more. Then after two years of Tamoxifen I went on Femara and again started feeling better again because the side effects of Tamoxifen can be pretty bad. But I have no idea how I would feel not being on Femara because pre-breast cancer I was a much healthier person.
So now the plan is I am off Femara for now through Labor Day. That should give enough time for it to leave my system and see if I have any fewer pains or if I get too worried. My oncologist brought up the stress of recurrence fears, not me. She said at that time, I can always decide to go back on it if I want.
I am happy to take one less pill each day. But it has been the last stand against recurrence. So now I have to learn to live without the benefits of anything to prevent recurrence. For now, I think I can live with this. But if my mind starts playing tricks on me with this recurrence crap, I may wimp out and decide to go back on it.
At the end of treatment, all of a sudden this constant care by all kinds of medical people to check you over and reassure you that it hasn't come back comes to a screeching halt. At this point, the doctors all say come back in 3, 6, or 12 months and we will check again. And the patient says 'whhhaaattt? But what if it comes back? Who will know?'
This is the most frequent time for patients to wig out and require emotional support from a support group or therapist to make sure they don't go off the deep end. It is a very stressful time. You are alone with the little thoughts in the middle of the night - what if it comes back?
With breast cancer, its a little different. You get surgery and chemotherapy. Medical personnel is all around to be aware of a single sneeze. Then some get radiation as well where you are seen daily for weeks on end. At the end of this time most go on to hormonal therapy - Tamoxifen, Femara, Aromasin, or the other one who's name I can't remember right now. That lasts for five to ten years. And then finally you are on your own and you see your oncologist maybe once a year.
I went through this a long time ago when I had thyroid cancer. At the end of about six months of doctor appointments I was left to cope on my own. And I can tell you in some ways it really sucked big time. And left me with some strong emotional issues that took a long time to recover from.
When I was diagnosed with breast cancer, I told myself I was not going to let cancer suck any happiness out of my life and went to support groups before my first surgery. Then I got a therapist at the end of radiation as well. But I was still on hormonal medication - 2 years of Tamoxifen and then Femara.
Yesterday I went to see my oncologist and she said it was time for me to end Femara - that last little pill to help prevent it from coming back. She said she had mentioned this at my visit last year but since I can't remember last week, never mind last year, I had no memory of this.
Basically while there is lots of data on the benefits of staying on Tamoxifen for ten years there is no research now to prove there is any benefit to staying on Femara or other aromatase inhibitors for longer than five years. There are ongoing studies on this but no results yet. This research will take years because they are following women after five years of Femara.
My oncologist brought up the joint pain issues I have. She said that one of the side effects of Femara was joint pain. I couldn't tell you if I am experiencing this or not. All I can remember is after chemo, I went on Tamoxifen and started feeling better because I wasn't in chemo any more. Then after two years of Tamoxifen I went on Femara and again started feeling better again because the side effects of Tamoxifen can be pretty bad. But I have no idea how I would feel not being on Femara because pre-breast cancer I was a much healthier person.
So now the plan is I am off Femara for now through Labor Day. That should give enough time for it to leave my system and see if I have any fewer pains or if I get too worried. My oncologist brought up the stress of recurrence fears, not me. She said at that time, I can always decide to go back on it if I want.
I am happy to take one less pill each day. But it has been the last stand against recurrence. So now I have to learn to live without the benefits of anything to prevent recurrence. For now, I think I can live with this. But if my mind starts playing tricks on me with this recurrence crap, I may wimp out and decide to go back on it.
Sep 12, 2016
Over- and Under-Diagnosis and Treatment of Breast Cancer
I found this interesting discussion on over and under diagnosis of breast cancer and how to avoid it. Its definitely worth the read.
The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.
Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.
But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.
I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.
The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.
Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.
But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.
I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.
Sep 6, 2016
Progesterone too?
So I have always wondered, what about progesterone in breast cancer treatment. A big part of your breast cancer diagnosis is its hormone status. My breast cancer was the most common type - ER+/PR+/Her2-. That translates to estrogen and progesterone positive and her2 negative.
This determines a big part of your treatment. If you are estrogen positive you are treated with Tamoxifen and/or one of the aromatase inhibitors. If you are Her2 positive, you can receive Herceptin. But no one ever said anything about progesterone. I always wondered why it was part of the diagnosis if it didn't affect treatment. I mean why bother?
But now things have changed. New research has found a way to control progesterone as well:
"Cancers with progesterone receptors are known for growing more slowly, however scientists have not been able to exploit this fact until they discovered the way they interact with estrogen, which causes the growth of some tumors"
"In the new study, researchers found that progesterone receptors interact with estrogen receptors in the tumor, changing their behavior and slowing the tumor's growth."
"Roughly 75 percent of women with breast cancer have tumors with the estrogen receptor, and 75 percent of those tumors also have progesterone receptors -- suggesting more than half of these patients could benefit if the treatment is shown to be successful."
And the outcome should be a cheap and safe treatment option.I'm all for this.
This determines a big part of your treatment. If you are estrogen positive you are treated with Tamoxifen and/or one of the aromatase inhibitors. If you are Her2 positive, you can receive Herceptin. But no one ever said anything about progesterone. I always wondered why it was part of the diagnosis if it didn't affect treatment. I mean why bother?
But now things have changed. New research has found a way to control progesterone as well:
"Cancers with progesterone receptors are known for growing more slowly, however scientists have not been able to exploit this fact until they discovered the way they interact with estrogen, which causes the growth of some tumors"
"In the new study, researchers found that progesterone receptors interact with estrogen receptors in the tumor, changing their behavior and slowing the tumor's growth."
"Roughly 75 percent of women with breast cancer have tumors with the estrogen receptor, and 75 percent of those tumors also have progesterone receptors -- suggesting more than half of these patients could benefit if the treatment is shown to be successful."
And the outcome should be a cheap and safe treatment option.I'm all for this.
Sep 5, 2016
Breast cancer and flabbiness
I am not sure this article tells me that much but it did try to figure out if breast cancer and its treatment cause weight gain. It discusses the results of a recent study that was recently published.
So breast cancer increases in incidence right about the same age as menopause. Therefore there has been some confusion if its menopause or cancer and its treatment that cause weight gain. But this article did nothing to help me.
First of all it looked at an average weight gain of 4 lbs for women with breast cancer who did not have chemo and of 11 lbs for women who received chemotherapy. 4 lbs or 11 lbs? That's nothing. I am more concerned about the 20 or 30 lbs weight gains. I know women who said they gained 5-10 lbs during treatment and then lost them. Those of us who gained more, even if active during treatment, have many more problems losing weight.
The real concern is that weight gain can have longer term health risks.
But the study promises to follow up with the women over a longer period of time. I would like to see a study about the women who gain 20 lbs or more during cancer treatment and ensuing health issues. No one ever seems to care what I think. Or to include me in research because I have too many other issues and would skew their data.
So breast cancer increases in incidence right about the same age as menopause. Therefore there has been some confusion if its menopause or cancer and its treatment that cause weight gain. But this article did nothing to help me.
First of all it looked at an average weight gain of 4 lbs for women with breast cancer who did not have chemo and of 11 lbs for women who received chemotherapy. 4 lbs or 11 lbs? That's nothing. I am more concerned about the 20 or 30 lbs weight gains. I know women who said they gained 5-10 lbs during treatment and then lost them. Those of us who gained more, even if active during treatment, have many more problems losing weight.
The real concern is that weight gain can have longer term health risks.
But the study promises to follow up with the women over a longer period of time. I would like to see a study about the women who gain 20 lbs or more during cancer treatment and ensuing health issues. No one ever seems to care what I think. Or to include me in research because I have too many other issues and would skew their data.
Aug 29, 2016
A long sad day
Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.
Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.
Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.
It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.
I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.
Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.
Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.
Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.
It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.
I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.
Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.
Aug 23, 2016
Who is with me on this?
I was totally disgusted but also happy when I read this article about this moron oncologist, Farid Fata, who told over 500 patients they had cancer and treated them unnecessarily. Or even if they had cancer, they continued to receive chemo long after they were in remission. The result? Hundreds of people with lasting health issues and even some deaths. Then I found this article with more background.
He also over billed Medicare and insurance companies for millions of dollars as patients received over 9,000 injections or infusions. Some received unnecessary chemo for over five years.
The only thing more despicable than people who claim they have cancer and don't to raise money for themselves, are doctors who mistreat patients like this.
I just want to get in line with all these other patients and smack him in the face for his lack of morals and crimes.Who is with me on this?
He also over billed Medicare and insurance companies for millions of dollars as patients received over 9,000 injections or infusions. Some received unnecessary chemo for over five years.
The only thing more despicable than people who claim they have cancer and don't to raise money for themselves, are doctors who mistreat patients like this.
I just want to get in line with all these other patients and smack him in the face for his lack of morals and crimes.Who is with me on this?
Aug 22, 2016
Research hope and hopes dashed
I do follow the latest breast cancer, thyroid cancer, rheumatoid arthritis and fibromyalgia medical research. Some inner child is waiting for the cure to all of these ailments. I have learned a great deal about these ailments through reading the advances and get hope that some day a cure will be there. I also welcome the access to medical and other research across the board.
When I was first diagnosed with thyroid cancer in 1981, if I wanted to find information I had to go to a university's research library and read medical text books. It was confusing to say the least. In those days research was left to scientists and published in technical journals that were dense and textbooks for those learning the science or medicine that were no easy read.
Times have changed and I can find research every where. I can browse scientific journals online, set up Google alerts to send me the latest news, review the disease information on association websites, and have access to advances as soon as they are announced. However they all seem to be followed with the disclaimers 'more research is needed' and 'FDA approval is 5-7 years away'. Which can be frustrating, to say the least.
Every so often, I read some research that makes me wonder if I am over thinking, and perhaps the rest of us are too. I read this article on the impact of stress hormones on breast cancer recurrence or progression due to treatment resistance. It starts out by saying progesterone may stimulate that growth of cells that make cancer resistant to estrogen based treatments. Then it goes on to talk about the role of CK5 and goes on from there...
I admit it, I got lost. My breast cancer was ER-/PR- so do I have to worry about this at all? Well once I read it three times, I figured it out and could follow along.
But it made me wonder (which can be a bad thing), should I try to NOT follow all this research? Am I over thinking the hope that there is a cure out there? Should I leave this research to the scientists and not get myself bogged down in the details? I mean I do get the sense of hope from all the research that some day that cure will show up.
But is it worth letting myself get excited about the potential in the research and then get let down by the fact that the ending is 'more research is needed' and 'FDA approval is 5-10 years away'. Am I contributing to my own emotional medical roller coaster by trying to follow the advances and ensuing waiting?
A big part of any medical ailment is the emotional roller coaster that becomes part of your life after diagnosis. Learning how to cope with the roller coaster can be very difficult. And am I aggravating my own stress levels by accessing all this research? I will have to do some more thinking on this.
When I was first diagnosed with thyroid cancer in 1981, if I wanted to find information I had to go to a university's research library and read medical text books. It was confusing to say the least. In those days research was left to scientists and published in technical journals that were dense and textbooks for those learning the science or medicine that were no easy read.
Times have changed and I can find research every where. I can browse scientific journals online, set up Google alerts to send me the latest news, review the disease information on association websites, and have access to advances as soon as they are announced. However they all seem to be followed with the disclaimers 'more research is needed' and 'FDA approval is 5-7 years away'. Which can be frustrating, to say the least.
Every so often, I read some research that makes me wonder if I am over thinking, and perhaps the rest of us are too. I read this article on the impact of stress hormones on breast cancer recurrence or progression due to treatment resistance. It starts out by saying progesterone may stimulate that growth of cells that make cancer resistant to estrogen based treatments. Then it goes on to talk about the role of CK5 and goes on from there...
I admit it, I got lost. My breast cancer was ER-/PR- so do I have to worry about this at all? Well once I read it three times, I figured it out and could follow along.
But it made me wonder (which can be a bad thing), should I try to NOT follow all this research? Am I over thinking the hope that there is a cure out there? Should I leave this research to the scientists and not get myself bogged down in the details? I mean I do get the sense of hope from all the research that some day that cure will show up.
But is it worth letting myself get excited about the potential in the research and then get let down by the fact that the ending is 'more research is needed' and 'FDA approval is 5-10 years away'. Am I contributing to my own emotional medical roller coaster by trying to follow the advances and ensuing waiting?
A big part of any medical ailment is the emotional roller coaster that becomes part of your life after diagnosis. Learning how to cope with the roller coaster can be very difficult. And am I aggravating my own stress levels by accessing all this research? I will have to do some more thinking on this.
Aug 15, 2016
Am I an expert at anything?
I can no longer work full time. I struggle to work 15 hours/week. But I don't have enough money. Cash is tight in our house. I mean I have savings in the bank but they are in nice safe IRAs so they will stay there and grow until I retire. Anyway, I am trying to come up with more ways to make money.
My first thought is I will promote my knitting and crocheting and be proactive and sell more. The more I sell, the more I can knit. This keeps me busy and out of trouble on days when I am not up to going to work. So I have added a new page to my blog which I will fill with more information and keep my Facebook page updated with pictures of my latest creations. I can take credit cards or checks (if I know you) and will ship in the US.
My second thought is perhaps I can sell my services as a cancer consultant and help people navigate the medical maze of a cancer diagnosis. So I am asking, for feedback here:
My background is two cancer diagnoses so I have walked the walk so I think I can talk the talk.
What do you think? Am I on to something here?
My first thought is I will promote my knitting and crocheting and be proactive and sell more. The more I sell, the more I can knit. This keeps me busy and out of trouble on days when I am not up to going to work. So I have added a new page to my blog which I will fill with more information and keep my Facebook page updated with pictures of my latest creations. I can take credit cards or checks (if I know you) and will ship in the US.
My second thought is perhaps I can sell my services as a cancer consultant and help people navigate the medical maze of a cancer diagnosis. So I am asking, for feedback here:
- Would you want a cancer consultant to help you with the medical maze and cancer roller coaster on where to find support and help locally to you?
- Would you pay for this? Either on the phone or in email?
- What kinds of questions do you/did you have?
My background is two cancer diagnoses so I have walked the walk so I think I can talk the talk.
What do you think? Am I on to something here?
Aug 8, 2016
Here Come the Vendors
I do a lot of talks about stroke recovery. About 100 per year. I learn so much from the therapists I talk to. Many of them are committed, caring, bright and motivated. I like the fact that I'm doing my talk to good people.
But there is one segment of therapists that can be tough to love.
Attending my seminars have been lots people from a variety of companies. These companies usually represent products. Sometimes they represent services, clinical trials, organizations, etc. But usually it’s products. And for me, these people can be very dangerous. They either want to know what I'm saying about their product or want me to promote their product. Those who want to know what I'm saying about their product never voluntarily tell me where they work. Those that want to promote their product are just the opposite. At some point in the seminar they'll approach me and talk up their product. And it's always uncomfortable. 
Many of the products have little or no scientific evidence behind them. Doing the research to provide evidence for a product is expensive and laborious. It's quicker, cheaper and less fraught with danger to put your product to market, and promote it. And I become a part of their promotion. So when I'm approached, it usually feels like hucksterism. It feels like I'm being sold on a product so that my seminar might become a platform for promotion.
People will hand me their card, and talk about the product. That card will become a reminder to look at product up. So how do I look it up? I try to strip away the product name in order to get to the core of the product, and then research core. For example, let's say somebody is selling Stroke-A-Way. If I look up Stroke-A-Way all I'll find is what Stroke-A-Way wants me to find. So instead, I look up the "active ingredient" (concept, or exercise, or whatever). I try to see if the active ingredient is scientifically based.
But what if it doesn't work? A lot of times I can go straight to clinical research sites during the seminar and look the "active ingredient" up. I can also send out a quick e-mail to experts in the field (I've been in research for a long time; lots of contacts) and ask their opinion.
So: What if the product sucks?
If the product has no evidence, I don't advocate it. And if you're a vendor, and I say your product has no evidence, you'll be pissed. But you shouldn't be. You're at the course, you read the course description, and you know I'm in research. So... I'm going to do the research.
But what if it doesn't work? A lot of times I can go straight to clinical research sites during the seminar and look the "active ingredient" up. I can also send out a quick e-mail to experts in the field (I've been in research for a long time; lots of contacts) and ask their opinion.
So: What if the product sucks?
If the product has no evidence, I don't advocate it. And if you're a vendor, and I say your product has no evidence, you'll be pissed. But you shouldn't be. You're at the course, you read the course description, and you know I'm in research. So... I'm going to do the research.
I wish these folks would read their diploma. On there some place is the word "science." It'll be an Associate of Science, a Bachelor of Science, a Masters of Science, or Doctorate of Science. When you got your license you dedicated yourself to providing treatment options based in... science.
So bringing it up in the seminar is not just dangerous for me, it's dangerous for the vendor. They try to sell me on a product, and make me aware of the product. Then I do the research. What if there is no evidence it work? The next time somebody asks me about the product I'll say there's no evidence behind it. I have to. It's my job. It probably would have been better had they not talk to me about it at all.
You know what the most widely read entry in this entire blog is? The entry on neuroaid. I only became aware of the product because they copped the name of this blog; The Stroke Recovery Blog. The theft got my attention, and made me do the research to find out that it...
So bringing it up in the seminar is not just dangerous for me, it's dangerous for the vendor. They try to sell me on a product, and make me aware of the product. Then I do the research. What if there is no evidence it work? The next time somebody asks me about the product I'll say there's no evidence behind it. I have to. It's my job. It probably would have been better had they not talk to me about it at all.
You know what the most widely read entry in this entire blog is? The entry on neuroaid. I only became aware of the product because they copped the name of this blog; The Stroke Recovery Blog. The theft got my attention, and made me do the research to find out that it...
- had a very low level of evidence behind it
- was available in a less expensive form
- used researchers who had a clear conflict of interest to promote it.
So if you get my attention, be prepared for the inevitable question: Is it evidence-based? This is my job. And I talked to a lot of stroke survivors who want it to be the job of every clinician. Figure out what works, and then do it. And the stuff the doesn't work. Don't do it.
BTW: Frankly, I don't necessarily advocate the products advertised on this blog. However, I will not accept advertisement for products A) that clearly don't work or B) competing products exists which better provide the "active ingredient."
By: "stroke recovery blog" "stroke blog"
Aug 1, 2016
Gotcha. Can't win, don't try.
He is able to get the headphones on using just his "good" side. Here's how he does it: First an earpiece on the "good" side and then use the same hand to move the other over to his "bad" side ear.
Which do you think would be better? Which would be better in the short run? Which would be better in the long run?
In the short run it may be better to do it with just the "good" arm. It might be quicker, and take less effort.
But in the long run what would be the effect? First of all he'll never learn how to use both arms for that skill. Also, since he's only using the "good" side for that movement, all the other tasks that use similar movements would not be practiced. And a lot of things use that same movement (Brushing teeth and hair, shaving, feeding, etc.) So he'd have less practice specific to putting on headphones, and then less carryover of that task to other tasks.
But here's the funny part: There are a lot of therapists who believe that he should do it one-handed. The thinking is this: The movement needed to complete the task of both arms is "bad" movement.
But here's the funny part: There are a lot of therapists who believe that he should do it one-handed. The thinking is this: The movement needed to complete the task of both arms is "bad" movement.
And, so the thinking goes, the more "bad" movement that you use, the more that "bad" movement will be "ingrained". Like a bad habit.
This idea, that "bad" movement should not be encouraged always struck me strange on the face of it. This is the thinking: "The more you move the worse you'll get."
This idea, that "bad" movement should not be encouraged always struck me strange on the face of it. This is the thinking: "The more you move the worse you'll get."
But everything we know about the brain suggests exactly the opposite. The more you practice something the better you get.
There is a weird assumption that is made: You will never try to move better, you will only use the "bad" movement forevermore. The idea is, survivors don't know what good movement is. Because survivors don't know what good movement is, you need a therapist there to correct you. Which... I don't know about you... sounds like it'll cost you a lot of money.
But let's say they're right. Let's say that if you do the task with both arms you would never do it "correctly." Now you have a decision to make. Do you do it "incorrectly" for the rest of your life, or do you not try to use the "bad" arm?
It was me, I would make the decision to use the "bad" arm. Why? Well first of all I stand a much better chance of learning to move the "bad" side better if I use it in every day tasks... every day. Second, movements from one task can feed forward to other tasks that used similar movements. So I might retrain not just for one task, but for a whole bunch of tasks. Third, I don't let the whole portion of my brain "lie fallow" and not do anything. The brain hates not doing anything. The brain goes through what's called "a pruning of the dendritic arbor." It's a fancy way of saying "use it or lose it." If a portion of the brain is not used, the neurons in that part of the brain start to shrink -- or "prune."
But there's another important reason to use any movement you have. Maybe, at the "end of the day" the task remains awkward and uncoordinated. So what? How many people play golf, enjoy it, but don't play perfectly (all of us)? How many people ski, and enjoy it, and don't have perfect form? What about music, or painting, or writing...
There is a weird assumption that is made: You will never try to move better, you will only use the "bad" movement forevermore. The idea is, survivors don't know what good movement is. Because survivors don't know what good movement is, you need a therapist there to correct you. Which... I don't know about you... sounds like it'll cost you a lot of money.
But let's say they're right. Let's say that if you do the task with both arms you would never do it "correctly." Now you have a decision to make. Do you do it "incorrectly" for the rest of your life, or do you not try to use the "bad" arm?
It was me, I would make the decision to use the "bad" arm. Why? Well first of all I stand a much better chance of learning to move the "bad" side better if I use it in every day tasks... every day. Second, movements from one task can feed forward to other tasks that used similar movements. So I might retrain not just for one task, but for a whole bunch of tasks. Third, I don't let the whole portion of my brain "lie fallow" and not do anything. The brain hates not doing anything. The brain goes through what's called "a pruning of the dendritic arbor." It's a fancy way of saying "use it or lose it." If a portion of the brain is not used, the neurons in that part of the brain start to shrink -- or "prune."
But there's another important reason to use any movement you have. Maybe, at the "end of the day" the task remains awkward and uncoordinated. So what? How many people play golf, enjoy it, but don't play perfectly (all of us)? How many people ski, and enjoy it, and don't have perfect form? What about music, or painting, or writing...
Bart: You make me sick, Homer. You're the one that told me I could do anything if I just put my mind to it.
Homer: Well now that you're a little bit older I can tell you that's a crock. No matter how good you are at something, there's always about a million people better than you.
Bart: Gotcha. Can't win, don't try.
This is my suggestion: Continue trying to do everything. And every time you do it try to make it a little bit better.
By: "stroke recovery blog" "stroke blog"