The Boobsy Twins, Lefty and Righty, were always thought to be identical. True Lefty was always a little bit bigger but basically they looked the same. Righty, however, had a little something that Lefty did not: errant DNA. What is this errant DNA, you might ask? Well it is a mystery to exactly what it is as no special tests have been performed to specifically characterize it but suffice it to say, it gave Righty the ability to outgrow Lefty and to make clones of herself in places where she does not belong. It was decided that Righty's plan to colonize the host had to be stopped even if it wasn't clear that is what she really intended to do. There was even some talk of completely eliminating Righty all together leaving Lefty as an only child. Of course the benign Lefty could be eliminated too just in case she had plans to follow Righty's evil course; the host could never be sure of Lefty's plans either. The host of Righty and Lefty asked herself repeatedly what did she do to deserve this betrayal, did she feed Righty too much estrogen? One of the very few things known about Righty was that she didn't like estrogen nor did she need it to colonize. A decision was made to cripple Righty and remove this bit of errant DNA. This was not an easy task: it involved cutting open the host twice, poisoning the host for 16 weeks, and then bombarding Righty 16 times with powerful radiation. The host is barely recognizable: a pale puffy, bald, lashless blob. No one now would ever suspect that the Boobsy Twins are identical. Lefty remains pale pink and completely symmetrical; Righty however, is a shrivelled brown shadow of herself with a deep gouge to her outer quadrant covered with bizarre freckles. Lest she let her host forget her existence, she still has the ability to cause pain if disturbed. It is not clear if Righty has learned her lesson not to out grow her sister and colonize the host or even if Lefty really possesses her evil twin's intentions too. Only time will tell.
I will leave for NY and then Boston later today. My internet access may be spotty especially in the next few days.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Plans
After my LiveStrong class tomorrow and when Naomi gets home from school, roughly the same time, we'll take off to NY stopping somewhere in PA for the night. If we are making good time, we might stop in "Jersey Gardens" for a prom dress. A few years ago, Naomi and I spent a week in NJ (with occasional side trips to Philly and New Hope) and went there. She was very much relieved that they weren't actual gardens but a huge discount mall perched in an industrial zone along the Hudson. No sales tax on clothes in NJ. We'll then make our way to somewhere in Long Island for the wedding and then return to Brooklyn to Diane and Harold's (Steve's brother)place. We'll go to Manhattan Sat. for the breast cancer race in Central Park-not sure if I'll actually run it yet. At the same time, my Michigan friends will be in Brooklyn too. Sunday at some point I'll either take the train or Mega Bus to Boston.
Naomi now has severe laryngitis and can only croak or whisper. Probably lost her voice making plans for the prom. Her best friend is a juinor who wants to take an outside boy to the prom but only seniors can buy tickets and get guest passes. Naomi's boyfriend has no interest in proms (turns out he is 22!) and Naomi planned just to go by herself but in her friend's eyes, that would be a waste of a guest pass. Naomi needed to find a Huron senior to take her to the prom according to her friend. This is where that cloud o'boys flitting around her came in handy. She asked the nearest one, a shy Ethiopian boy named "Noway" to be her date and he happily obliged even after it was explained in her croaking whisper that he technically would be taking her friend while she got a guest pass for her friend's date, but not to worry, she really will be with him. If I were Noway, I'd say 'no way'.
I got her to clean her room with the promise of a Jersey Gardens visit.
In my LiveStrong class, there is a woman who is even more active than me. Throughout her treatments for ovarian cancer, she kept up her Master's swim program and ran quite a bit. Two weeks ago, she eyed my pink fuzzy cap and asked what was growing underneath. Absolutely nothing. Less than this? She then whipped of her wig, which I had assumed was her real hair as it was gray. She was completely bald except for some stray patches of very short stubble. Yesterday she showed me about a half inch of hair. Amazing how fast hair grows on some people. I asked her when she had finished treatment. Oh I'm still in treatment, my cancer came back.
If this cancer comes back, I don't think I would be capable of smiling. I don't think I'd find the strength to deal with it. Just dealing with the 'what-ifs' is too much for me sometimes and living in denial that this could happen is sometimes the only way I don't sink into despair.
During my walk the other day with a neighbor, we ran into another neighbor who I found out is dealing with melanoma-thankfully early. In a row of 4 houses, 3 of them are clouded with cancer.
Naomi now has severe laryngitis and can only croak or whisper. Probably lost her voice making plans for the prom. Her best friend is a juinor who wants to take an outside boy to the prom but only seniors can buy tickets and get guest passes. Naomi's boyfriend has no interest in proms (turns out he is 22!) and Naomi planned just to go by herself but in her friend's eyes, that would be a waste of a guest pass. Naomi needed to find a Huron senior to take her to the prom according to her friend. This is where that cloud o'boys flitting around her came in handy. She asked the nearest one, a shy Ethiopian boy named "Noway" to be her date and he happily obliged even after it was explained in her croaking whisper that he technically would be taking her friend while she got a guest pass for her friend's date, but not to worry, she really will be with him. If I were Noway, I'd say 'no way'.
I got her to clean her room with the promise of a Jersey Gardens visit.
In my LiveStrong class, there is a woman who is even more active than me. Throughout her treatments for ovarian cancer, she kept up her Master's swim program and ran quite a bit. Two weeks ago, she eyed my pink fuzzy cap and asked what was growing underneath. Absolutely nothing. Less than this? She then whipped of her wig, which I had assumed was her real hair as it was gray. She was completely bald except for some stray patches of very short stubble. Yesterday she showed me about a half inch of hair. Amazing how fast hair grows on some people. I asked her when she had finished treatment. Oh I'm still in treatment, my cancer came back.
If this cancer comes back, I don't think I would be capable of smiling. I don't think I'd find the strength to deal with it. Just dealing with the 'what-ifs' is too much for me sometimes and living in denial that this could happen is sometimes the only way I don't sink into despair.
During my walk the other day with a neighbor, we ran into another neighbor who I found out is dealing with melanoma-thankfully early. In a row of 4 houses, 3 of them are clouded with cancer.
Tuesday, April 28, 2009
Heart disease vs Breast Cancer
When I had my first breast cancer scare 9 years ago, there was a graph on the wall in the waiting room of the breast care center showing the deaths at any age from heart disease vs that from breast cancer. The line for heart disease was much steeper than that of breast cancer. I was really annoyed at the time because I was just told I had a suspicious area highly suggestive of early cancer and I certainly worried about that more than heart disease. If you ask people what they are more afraid of, heart attacks or breast cancer, I am sure they would answer breast cancer. Many people 'feel' that they are safer in a car than an airplane even though statistically the plane is the safer by far. Still my heart rate goes up when we take off or we hit bumps in the air and it never does while driving unless ice is involved. As for worrying about death from other sources vs death by breast cancer, for the next 10 years it's 4% vs 20% according to the Ad***nt program the oncologist ran for me though the basis of those numbers is based on old data as treatments have changed considerably since then. No Herceptin for early cancer (the her2+ were lumped together with the her2-), no dose dense therapy as there was no Neulasta, no Taxol for node negatives, etc.I assume heart disease accounts for the lion's share of the 4%. Also the time for worry in TNBC is not the whole 10 years, it is highly concentrated in the first 3 years with it rearing its ugly head in some cases even before chemo is finished. I am to see some member of my team every 3 months for at least 2 years. They are mainly checking for local recurrences and only will do scans if I have symptoms.
In the past month, I have picked up 3 official Canadian followers and many unofficial ones. Welcome! It is interesting to compare treatments across the border. My step-grandmother is Canadian and not a fan of the Health System. She has a condition in which she is deficient in producing an enzyme converting what the thyroid produces to its active form so she needs the active form. This stuff (Cytomel) is much more expensive than the inactive form (Synthroid). Even though this is a recognized deficiency that some French Canadians have, the powers that be decided that she will just have to make do with Synthroid. For a while she had to take a bus down to Plattsburgh, NY to get the Cytomel. Fortunately she can now get it in Montreal.
A few years ago, our family was in Niagara Falls just a few miles away from the American border. Naomi wanted a cheeseburger but noted it came with cheddar which is too strong for her bland tastes. She asked the waitress if she could have "American" cheese instead. The waitress told her that she had no idea where the cheese came from but if it was that important to her, she could check where it came from. Apparently the processed cheese food there, if they indeed have it, isn't called "American".
Good thing it's an indoor exercise day as it is raining and cool.
Oliver, my 15 month grandson who I will see Sunday, recently had a check-up. He is tall and skinny (only 22 lbs) but healthy. While going over the appropriate milestones he should have reached, it was asked if he could walk backwards. He hadn't been observed doing this (if he was, I would suggest screening for a neurological disorder). They then tried to see if he could do it on the spot. He initially kept turning around and walking frontwards but finally took a few steps backwards when cornered.
Naomi had her driving privileges rescinded as she went way over her texting allotment. She claims she can't help it but she will now have to figure a way to cut down if she wants to drive again.
In the past month, I have picked up 3 official Canadian followers and many unofficial ones. Welcome! It is interesting to compare treatments across the border. My step-grandmother is Canadian and not a fan of the Health System. She has a condition in which she is deficient in producing an enzyme converting what the thyroid produces to its active form so she needs the active form. This stuff (Cytomel) is much more expensive than the inactive form (Synthroid). Even though this is a recognized deficiency that some French Canadians have, the powers that be decided that she will just have to make do with Synthroid. For a while she had to take a bus down to Plattsburgh, NY to get the Cytomel. Fortunately she can now get it in Montreal.
A few years ago, our family was in Niagara Falls just a few miles away from the American border. Naomi wanted a cheeseburger but noted it came with cheddar which is too strong for her bland tastes. She asked the waitress if she could have "American" cheese instead. The waitress told her that she had no idea where the cheese came from but if it was that important to her, she could check where it came from. Apparently the processed cheese food there, if they indeed have it, isn't called "American".
Good thing it's an indoor exercise day as it is raining and cool.
Oliver, my 15 month grandson who I will see Sunday, recently had a check-up. He is tall and skinny (only 22 lbs) but healthy. While going over the appropriate milestones he should have reached, it was asked if he could walk backwards. He hadn't been observed doing this (if he was, I would suggest screening for a neurological disorder). They then tried to see if he could do it on the spot. He initially kept turning around and walking frontwards but finally took a few steps backwards when cornered.
Naomi had her driving privileges rescinded as she went way over her texting allotment. She claims she can't help it but she will now have to figure a way to cut down if she wants to drive again.
Monday, April 27, 2009
Procrastination
I am one premium procrastinator. I had just one chore for the day and I promised myself no blogging until I got it done thus the late entry. Not that I didn't find funner things to do instead.
I am finding out that wishing that my weight would go away and keeping it a big secret from myself is not working. Aside from its ugliness, its presence is associated with much poorer 'outcomes'. So the other day I finally hopped on that scale and holy moly-I couldn't believe my eyes. This of course contibuted alot to my huge pity party of the other day. I have already dropped 3 lbs-a small drop in the fat bucket-but a start. I have to view this as a chance to carve a new body from this big cube of lard. I do have some muscles but they are buried deep. It is a miracle I can run as well as I do.
I ran more than 4 miles this morning and then took a mile walk with a neighbor. Still nice and sunny but more storms are coming in. All the fruit trees have blossoms and the trilliums and wood lilies are out in the woods by my house.
A cyber friend recently had her tumor and nodes removed. One node was much larger than the original tumor. But the strange and upsetting thing is that they misplaced her tumor before pathology was done on it!!! By the time they found it, it had decomposed to the point of uselessness. Since it was in her nodes, they will give her the same aggressive chemo regardless but no receptor typing was done so what to do next?
I am finding out that wishing that my weight would go away and keeping it a big secret from myself is not working. Aside from its ugliness, its presence is associated with much poorer 'outcomes'. So the other day I finally hopped on that scale and holy moly-I couldn't believe my eyes. This of course contibuted alot to my huge pity party of the other day. I have already dropped 3 lbs-a small drop in the fat bucket-but a start. I have to view this as a chance to carve a new body from this big cube of lard. I do have some muscles but they are buried deep. It is a miracle I can run as well as I do.
I ran more than 4 miles this morning and then took a mile walk with a neighbor. Still nice and sunny but more storms are coming in. All the fruit trees have blossoms and the trilliums and wood lilies are out in the woods by my house.
A cyber friend recently had her tumor and nodes removed. One node was much larger than the original tumor. But the strange and upsetting thing is that they misplaced her tumor before pathology was done on it!!! By the time they found it, it had decomposed to the point of uselessness. Since it was in her nodes, they will give her the same aggressive chemo regardless but no receptor typing was done so what to do next?
Sunday, April 26, 2009
Eyelashes
If I look sideways, I can see a mm of lower eyelashes. Maybe in 5 days, they will be long enough for mascara. Running is becoming easier. Since Jan 1, I've run about 78 miles. Sounds like alot but it used to be just 3 weeks worth in the not so distant past.
We had some impressive storms yesterday. I took in my delicate stuff for the first round as they predicted hail but I didn't know the second set of storms had hail too and some of my seedlings are damaged. For my birthday, I was givene some calla lily tubers. Can't wait to see what they look like when they come up. I did a little more gardening. Half of my creeping phlox are in bloom.
Waiting for Josh and Julia to take me out to lunch. A lazy day.
We had some impressive storms yesterday. I took in my delicate stuff for the first round as they predicted hail but I didn't know the second set of storms had hail too and some of my seedlings are damaged. For my birthday, I was givene some calla lily tubers. Can't wait to see what they look like when they come up. I did a little more gardening. Half of my creeping phlox are in bloom.
Waiting for Josh and Julia to take me out to lunch. A lazy day.
Saturday, April 25, 2009
Petty pity party
There are no lashes at all on my right eye and just a few on my left. They will probably be gone soon too. I know in the scheme of things, this shouldn't matter but it really makes me sad to look so weird. I wanted to call the moms up last night and tell them not to come over. I just want to hide. In 6 days, I am to go to a wedding and I have no idea how to look presentable between my bloated mid-section and my fish eyes (no lashes on them either). So what makes them fall out now-47 days after the last poisoning? I suppose each hair follicule has a resting phase lasting a few months. When I had only a few extra nasty hairs, it sometimes took months before I'd see that particular hair again. (Later, of course they had plenty of replacements and plucking became a daily activity instead of a once a month clean-up; this is one of the few benefits of chemo not having to do this). I had read that for head hair, at any given time, one third of the hair follicules are in resting phase but with mild hyperthyroidism, no resting phase and you end up with thicker hair, which indeed was the case. With severe hyperthyroidism, the hair breaks off easily. Seems like the eyelash resting phases are all in sync. I have no leg, armpit or pubes either. My head hair, at most is 5 mm long and completely transparent. At this rate in 4 months, I'll have an inch of barely visible hair. I am one sad mutant.
I know-very petty. I should be thankful that I was spared the semi-permanent nerve damage very common with Taxol resulting in numb fingers and toes that can last for a year.
As for the moms group, the weather co-operated and we were able to sit on the patio. My geraniums are in bloom that I brought outside so we had some color along with my color changing solar lights and my string of stars. I was very tired trying to repair the 6 months of neglect and couldn't muster enough energy to cook so I had Steve pick up something. I am now able to drink wine though I am limiting how much I drink even though so far there is no link to TNBC. It is linked to estrogen positive breast cancer though. Presumably, after one drink and if one is on replacement hormones, the blood level of estrogens spikes threefold due to alcohol slowing down the clearance of estrogen by the liver. This is all in Susan Love's book. Somehow taking folic acid ameliorates this effect. I am now taking vitamins.
I will go for a run now and hope it will put me in a better mood.
I know-very petty. I should be thankful that I was spared the semi-permanent nerve damage very common with Taxol resulting in numb fingers and toes that can last for a year.
As for the moms group, the weather co-operated and we were able to sit on the patio. My geraniums are in bloom that I brought outside so we had some color along with my color changing solar lights and my string of stars. I was very tired trying to repair the 6 months of neglect and couldn't muster enough energy to cook so I had Steve pick up something. I am now able to drink wine though I am limiting how much I drink even though so far there is no link to TNBC. It is linked to estrogen positive breast cancer though. Presumably, after one drink and if one is on replacement hormones, the blood level of estrogens spikes threefold due to alcohol slowing down the clearance of estrogen by the liver. This is all in Susan Love's book. Somehow taking folic acid ameliorates this effect. I am now taking vitamins.
I will go for a run now and hope it will put me in a better mood.
Friday, April 24, 2009
recovery
Running is becoming easier: I went for 2 miles today without taking a break and quickly recovered before running almost 2 miles more. On the elipitical trainer, I am doing that at a higher level now also. The MRI is back in service so I will do the 2nd part of the chemo brain study next week if they can find an open slot before I leave to the east coast-not that I am looking forward to being stuffed into that thumping tube of claustophobia for an hour. I don't think I suffered so much from chemo brain per se, can do puzzles quickly etc but I do find myself easily becoming overwhelmed for little reason. Such as today. The moms are coming over later and the house is a mess. I am sure that they will understand or maybe not, that I have only so much energy for somethings and cleaning gets put on the back burner. On the other hand, I should have all the time in the world but it is amazing how the day fills up. Steve is doing some of the cleaning.
Marilyn's eyelashes have been growing back in for 3 weeks now and she no longer needs a magnifying glass to see them. I am down to a quarter of the top and none on the bottom. It just looks weird and makes me sad. I know it's supposed to only temporary but it has been 7 months now that I have been dealing with this in one form or another. I must have the slowest hair to return in history. It used to be very fast growing. I must have wished it to stop at some point and this is what I get- 3 mm of transparent stubble.
I had my last round of teacher conferences ever yesterday. Maybe I will never go into that high school again. I didn't see all of her teachers, just the academic ones and her special ed consultant. In general, all was good or at least fixable. I had fretted about an unexcused absence thinking she must have skipped an hour to be with that boyfriend but it turned out the teacher made a mistake. Naomi must have a different persona in school as several teachers remarked how well-mannered and sweet she is. Suffice it to say, this persona is usually absent at home. Another teacher remarked on what a boy magnet she was surrounded by a cloud of boys and having to constantly shoo them away. She just laughed when I told her that. Prom is coming up but her boyfriend won't be able to take her. She wants to go anyway, hell or high water. She doesn't want to be with a single escort because she wants to dance with everyone. She wants a dress this weekend.
On the job front, I am to earn ONE dollar by signing my rights over to my former employer for my recent patent. Of course the dollar wasn't included in the FedEx package I received today but I assume my separation agreement included something about me being on their beck and call to sign things indefinitely. Also I got some notice from them saying my health insurance will be changed AGAIN but not until the end of the year.
Next task, wash my poor smelly pug and his bedding. He does not enjoy this-not one bit.
Marilyn's eyelashes have been growing back in for 3 weeks now and she no longer needs a magnifying glass to see them. I am down to a quarter of the top and none on the bottom. It just looks weird and makes me sad. I know it's supposed to only temporary but it has been 7 months now that I have been dealing with this in one form or another. I must have the slowest hair to return in history. It used to be very fast growing. I must have wished it to stop at some point and this is what I get- 3 mm of transparent stubble.
I had my last round of teacher conferences ever yesterday. Maybe I will never go into that high school again. I didn't see all of her teachers, just the academic ones and her special ed consultant. In general, all was good or at least fixable. I had fretted about an unexcused absence thinking she must have skipped an hour to be with that boyfriend but it turned out the teacher made a mistake. Naomi must have a different persona in school as several teachers remarked how well-mannered and sweet she is. Suffice it to say, this persona is usually absent at home. Another teacher remarked on what a boy magnet she was surrounded by a cloud of boys and having to constantly shoo them away. She just laughed when I told her that. Prom is coming up but her boyfriend won't be able to take her. She wants to go anyway, hell or high water. She doesn't want to be with a single escort because she wants to dance with everyone. She wants a dress this weekend.
On the job front, I am to earn ONE dollar by signing my rights over to my former employer for my recent patent. Of course the dollar wasn't included in the FedEx package I received today but I assume my separation agreement included something about me being on their beck and call to sign things indefinitely. Also I got some notice from them saying my health insurance will be changed AGAIN but not until the end of the year.
Next task, wash my poor smelly pug and his bedding. He does not enjoy this-not one bit.
Thursday, April 23, 2009
How long have Triple Negative Tumors been around?
Less than 3 years.
Back in September when I was told that my tumor was triple negative, I drew a blank: I never had heard of the term before even though I am fairly well read and breast cancer articles have always sparked my interest as I perceived myself to be 'high risk" especially after a breast cancer scare 9 years ago. When my mom had breast cancer in 1991, I immediately read all I could to help her make a decision (which in the end, she refused to make so I made it for her). From what I gathered, breast cancer was divided into two camps: estrogen positive-more common for the post-menopausal ladies and highly treatable and estrogen negative-not very treatable and most common among premenopausal ladies. Whether the cancer had spread or not was directly correlated to tumor size: at 2.5 cm her tumor was 'borderline'. I don't think they ever graded her tumor but they did see if it had estrogen receptors. I don't think she had a full lymph node dissection. They sampled her nodes randomly and they were negative. Breast conservation had just begun as a concept and that's what I decided for her. She had 6 weeks of radiation and took tamoxifen for 5 years and that was it. Previous to breast cancer, she took Prem-pro for 20 years after a hysterectomy. I assume she stopped taking it when she got BC but I am not sure.
The prognosis program-Ad***ant- (I don't want the makers googling me) predicts your survival based on age, tumor size, your general health, tumor grade, type of therapy (in my case 'third generation") and whether your tumor is estrogen positive. Nothing about whether you are Her2 negative (the third negative of 'triple negative'-the second negative-progestin is not so important). In general, 30% of BC tumors have this marker and they are super aggressive. It is not clear to me how many estrogen negative tumors also are her2 positive. I am guessing more than 30%. Herceptin has been around for 11 years to treat metastatic her2 positive breast cancer but it has only been approved to be used since 2006 in early her2 pos BC to prevent metastasis. So the triple negative label was not used before 2006 I just learned today. The Ad888ant data to predict one's survival in ten years thus is not based on what is happening today as those her2 pos ladies are lumped together with us and who up to 2006, were under treated (except those in clinical trials). Also it is not clear how long the 'third generation chemo' has been used for early BC-the main component in question being the Taxol. I assume the 'fourth generation chemo' will include Avastin or maybe carboplatin.
Again I am grasping at straws trying to convince myself that my odds are much better than what the program spat out. Also in contention was lumping me in the 3-5 cm category instead of the 2-3 cm, which my surgeon had. My tumor was barely 3 cm but they put me in the larger category because I had a 2nd tumor.
My new hair is absolutely clear colored and at best is 3 mm long. This is what I would have on my legs 3 days without shaving and that would NOT be clear colored. No new hair any place else and I am probably still losing the upper lashes. It has been more than 6 weeks since chemo.
I bought more solar lights for my patio the other day including a string of stars that I strung in the neighbor's arborvitae that shades one side of my patio. Until I can put more flowers in, I will have to be content with all my color changing lights at night. Little things.
The weather went from sunny to hail storm and back again several times yesterday but I did get an easy run in. I spent part of the day with Brenda in part celebrating my birthday and now have more flowers for my patio. I went back to the rad place to schedule my follow-ups. I won't go back there until November though I see the onc in August.
After my LiveStrong class today, I have teacher conferences-the last ever. I better hear some good news there.
Back in September when I was told that my tumor was triple negative, I drew a blank: I never had heard of the term before even though I am fairly well read and breast cancer articles have always sparked my interest as I perceived myself to be 'high risk" especially after a breast cancer scare 9 years ago. When my mom had breast cancer in 1991, I immediately read all I could to help her make a decision (which in the end, she refused to make so I made it for her). From what I gathered, breast cancer was divided into two camps: estrogen positive-more common for the post-menopausal ladies and highly treatable and estrogen negative-not very treatable and most common among premenopausal ladies. Whether the cancer had spread or not was directly correlated to tumor size: at 2.5 cm her tumor was 'borderline'. I don't think they ever graded her tumor but they did see if it had estrogen receptors. I don't think she had a full lymph node dissection. They sampled her nodes randomly and they were negative. Breast conservation had just begun as a concept and that's what I decided for her. She had 6 weeks of radiation and took tamoxifen for 5 years and that was it. Previous to breast cancer, she took Prem-pro for 20 years after a hysterectomy. I assume she stopped taking it when she got BC but I am not sure.
The prognosis program-Ad***ant- (I don't want the makers googling me) predicts your survival based on age, tumor size, your general health, tumor grade, type of therapy (in my case 'third generation") and whether your tumor is estrogen positive. Nothing about whether you are Her2 negative (the third negative of 'triple negative'-the second negative-progestin is not so important). In general, 30% of BC tumors have this marker and they are super aggressive. It is not clear to me how many estrogen negative tumors also are her2 positive. I am guessing more than 30%. Herceptin has been around for 11 years to treat metastatic her2 positive breast cancer but it has only been approved to be used since 2006 in early her2 pos BC to prevent metastasis. So the triple negative label was not used before 2006 I just learned today. The Ad888ant data to predict one's survival in ten years thus is not based on what is happening today as those her2 pos ladies are lumped together with us and who up to 2006, were under treated (except those in clinical trials). Also it is not clear how long the 'third generation chemo' has been used for early BC-the main component in question being the Taxol. I assume the 'fourth generation chemo' will include Avastin or maybe carboplatin.
Again I am grasping at straws trying to convince myself that my odds are much better than what the program spat out. Also in contention was lumping me in the 3-5 cm category instead of the 2-3 cm, which my surgeon had. My tumor was barely 3 cm but they put me in the larger category because I had a 2nd tumor.
My new hair is absolutely clear colored and at best is 3 mm long. This is what I would have on my legs 3 days without shaving and that would NOT be clear colored. No new hair any place else and I am probably still losing the upper lashes. It has been more than 6 weeks since chemo.
I bought more solar lights for my patio the other day including a string of stars that I strung in the neighbor's arborvitae that shades one side of my patio. Until I can put more flowers in, I will have to be content with all my color changing lights at night. Little things.
The weather went from sunny to hail storm and back again several times yesterday but I did get an easy run in. I spent part of the day with Brenda in part celebrating my birthday and now have more flowers for my patio. I went back to the rad place to schedule my follow-ups. I won't go back there until November though I see the onc in August.
After my LiveStrong class today, I have teacher conferences-the last ever. I better hear some good news there.
Wednesday, April 22, 2009
My New Beauty Routine
Well I guess I am using the term 'beauty' loosely here but "what I go through to make myself somewhat presentable" was too long.
First step: Wash with greasy cream and then slather hydrating lotion all over face. This step is so alien to me because up to now, I've had very oily skin though menopause had dried it out somewhat. If I didn't wash my hair daily, it would hang in oily strings (see senior picture on post before). But thanks to chemo, no oil glands!
2nd: Use concealer to hide dark under-eye circles and to negate red nose.
3rd: Draw eyebrows with pencil approximately where they were before. There are a few stray hairs left to guide me but I am just hoping that I can duplicate my effort with the other eye. I only have had to do this in the past few weeks. The LiveStrong ladies insist I do I do a good job with this and that they look real but maybe they are just being kind. I had thought getting through chemo with my eyebrows and eyelashes intact meant I was spared the indignity of them falling out. Ha!
4th: Use eyebrow pencil under eye to make it appear, at least from a distance that dark coloring is due to eyelashes. Use eye shadow to 'brighten' my eyes per instructions by the "Look Good! Feel Better!" ladies. I've had mixed results with this. My oncologist once looked at my eyes and thought I must have some weird eye side effect thing going on and I had to say it was just make-up.
5th: Use mascara brush to darken and thicken any eyelashes that I can't see. No more lower ones now and two-thirds of the uppers are gone. Maybe the uppers I have will stay. Please let them stay!
6th: Blush so I don't look so pale. I never have been pale before except the day that I gave birth to Shanna and lost several pints of blood. After 24 hours and a transfusion, I managed to put on some make-up to disguise the damage. The OB during his rounds noticed my color and said that I must have recovered. Ha! Still had a hemocrit of 18 after the transfusion. This transfusion occured during the time they didn't know how to test for AIDS and hep C, which made me worry for a while but after almost 30 years and two more healthy kids, I suppose I am safe. Still I was happy I didn't need a transfusion with Josh when the virus was more prevalent in the midwest blood supply.
7th: Lipstick-not much change here. I try to use the long lasting kind but it's hard to put on perfectly, which I more than occasionally notice after the fact, is crooked. Foundation: optional-my skin still doesn't look all that bad. I would put it on before the blush though.
8th: My only time saving step. Rub in smelly regrowth cream and hope that it is indeed doing something. Put on wig and hope it remains straight. Of course I sometimes notice way after the fact that it has become askew. I keep begging Steve for help with this-please tell me that I am not walking around with hair two inches longer on one side than the other.
Under the bizarre 'when life hands you a lemon, make lemonade' department aka stupid things to say to cancer patients is pointing out all the money I must be saving in haircuts, shampoo, hair products, etc. People have told me this on several occasions. Of course that one Neulasta co-pay would cover all my haircuts for five years and I had paid too much for them as it was. Cancer is definitely not a budget enhancing opportunity even with my free Y membership, free hats, free make-up, occasional free lunches at the Wellness Community, etc. And I really shouldn't bitch because even with the inferior insurance I have (compared to last year), it is way better than most. I haven't added up all the charges yet that this whole experience has cost me or the insurance companies but I am sure that I am over the 150K mark. And for those who do not have insurance....
It is almost the time now that I had to rush down to the hospital to wait forever to get fried. I was told that if I were more than 20 minutes late, they would cancel the session. Must be real fun for those who have more than the 4 miles I drove. I once was 25 minutes late to a PT session (to cure my frozen shoulder) and they cancelled it. No more of that! My breast was just starting to get red and painful so I am glad to have no more sessions. I will miss the characters in the rad waiting room. They sang "Happy Birthday" to me yesterday. There is a real spirit of camaderie with our similar stories.
After the LiveStrong class yesterday, Marilyn took me out for a 'birthday' smooothie. We don't wear our wigs to class-I wear my bright pink fuzzy cap and she wears a pale blue do-rag. The smoothie place was on campus. For a brief moment, I wondered what the healthy college students thought seeing two older ladies who obviously have (had) cancer sipping smoothies in the corner but then figured we were invisible. The smoothie preparer did note my 'pink' hair but I just smiled. He did say he like it. We stayed there for an hour comparing notes on the whole cancer experience. It was fun.
Later Steve and I went out for a birthday dinner though I was still full from the smoothie. He had gotten me some nice flowers and picture books on Italy.
I have heard that cancer survivors no longer dread birthdays but welcome them as proof that they are still there. Worrying about graying hair and wrinkles just becomes so petty.
First step: Wash with greasy cream and then slather hydrating lotion all over face. This step is so alien to me because up to now, I've had very oily skin though menopause had dried it out somewhat. If I didn't wash my hair daily, it would hang in oily strings (see senior picture on post before). But thanks to chemo, no oil glands!
2nd: Use concealer to hide dark under-eye circles and to negate red nose.
3rd: Draw eyebrows with pencil approximately where they were before. There are a few stray hairs left to guide me but I am just hoping that I can duplicate my effort with the other eye. I only have had to do this in the past few weeks. The LiveStrong ladies insist I do I do a good job with this and that they look real but maybe they are just being kind. I had thought getting through chemo with my eyebrows and eyelashes intact meant I was spared the indignity of them falling out. Ha!
4th: Use eyebrow pencil under eye to make it appear, at least from a distance that dark coloring is due to eyelashes. Use eye shadow to 'brighten' my eyes per instructions by the "Look Good! Feel Better!" ladies. I've had mixed results with this. My oncologist once looked at my eyes and thought I must have some weird eye side effect thing going on and I had to say it was just make-up.
5th: Use mascara brush to darken and thicken any eyelashes that I can't see. No more lower ones now and two-thirds of the uppers are gone. Maybe the uppers I have will stay. Please let them stay!
6th: Blush so I don't look so pale. I never have been pale before except the day that I gave birth to Shanna and lost several pints of blood. After 24 hours and a transfusion, I managed to put on some make-up to disguise the damage. The OB during his rounds noticed my color and said that I must have recovered. Ha! Still had a hemocrit of 18 after the transfusion. This transfusion occured during the time they didn't know how to test for AIDS and hep C, which made me worry for a while but after almost 30 years and two more healthy kids, I suppose I am safe. Still I was happy I didn't need a transfusion with Josh when the virus was more prevalent in the midwest blood supply.
7th: Lipstick-not much change here. I try to use the long lasting kind but it's hard to put on perfectly, which I more than occasionally notice after the fact, is crooked. Foundation: optional-my skin still doesn't look all that bad. I would put it on before the blush though.
8th: My only time saving step. Rub in smelly regrowth cream and hope that it is indeed doing something. Put on wig and hope it remains straight. Of course I sometimes notice way after the fact that it has become askew. I keep begging Steve for help with this-please tell me that I am not walking around with hair two inches longer on one side than the other.
Under the bizarre 'when life hands you a lemon, make lemonade' department aka stupid things to say to cancer patients is pointing out all the money I must be saving in haircuts, shampoo, hair products, etc. People have told me this on several occasions. Of course that one Neulasta co-pay would cover all my haircuts for five years and I had paid too much for them as it was. Cancer is definitely not a budget enhancing opportunity even with my free Y membership, free hats, free make-up, occasional free lunches at the Wellness Community, etc. And I really shouldn't bitch because even with the inferior insurance I have (compared to last year), it is way better than most. I haven't added up all the charges yet that this whole experience has cost me or the insurance companies but I am sure that I am over the 150K mark. And for those who do not have insurance....
It is almost the time now that I had to rush down to the hospital to wait forever to get fried. I was told that if I were more than 20 minutes late, they would cancel the session. Must be real fun for those who have more than the 4 miles I drove. I once was 25 minutes late to a PT session (to cure my frozen shoulder) and they cancelled it. No more of that! My breast was just starting to get red and painful so I am glad to have no more sessions. I will miss the characters in the rad waiting room. They sang "Happy Birthday" to me yesterday. There is a real spirit of camaderie with our similar stories.
After the LiveStrong class yesterday, Marilyn took me out for a 'birthday' smooothie. We don't wear our wigs to class-I wear my bright pink fuzzy cap and she wears a pale blue do-rag. The smoothie place was on campus. For a brief moment, I wondered what the healthy college students thought seeing two older ladies who obviously have (had) cancer sipping smoothies in the corner but then figured we were invisible. The smoothie preparer did note my 'pink' hair but I just smiled. He did say he like it. We stayed there for an hour comparing notes on the whole cancer experience. It was fun.
Later Steve and I went out for a birthday dinner though I was still full from the smoothie. He had gotten me some nice flowers and picture books on Italy.
I have heard that cancer survivors no longer dread birthdays but welcome them as proof that they are still there. Worrying about graying hair and wrinkles just becomes so petty.
Tuesday, April 21, 2009
Done!
Me at 3
As a graduating senior
With Shanna, age 1, and me age 26.
Finishing the Detroit Marathon at age 31. Over the next few years, I became fasterSo its my birthday and I am done, done, done with treatment. A good thing too as my last day lasted 2.5 hours of waiting and waiting. No respect for patients.
Monday, April 20, 2009
Dead woman Running
Tomorrow with my last radiation treatment, I enter a new phase of cancerland-survivorship. The struggle as I have heard from those who have gone before me, is to keep fears of recurrence or mets way back in the mind and to try to live as if this whole experience is behind me even as the side effects linger. This will not be a passive experience. To survive, I must change my diet and increase my exercise. Recurrence rates are presumably much higher among the obese.
Someone gave me a paper yesterday on how bisphosphonates might prevent leukemia-a 'common' side effect of radiation. Of course they didn't define what common meant but in my book, it means more than 50% when in reality, the risk of radiation induced cancers (mainly sarcoma) is less than 0.5% (source-Susan Love). All these studies were done in mice.
When I am in NYC in a couple of weeks, there will be a breast cancer run/walk in Central Park that my brother-in-law's girlfriend said she's doing partly in my honor. Still deciding if to join her.
As I entered the rad building today, a young woman approached me saying I looked familiar. Turns out she ran the coffee kiosk outside my lab and would make me lattes. Argh! She's too young for this mess! I'm too young for this stuff too. In the waiting room, it was just us three: A, M and me-the positives about this treatment though I will still see M in my LiveStrong class. One more zapping.
Yesterday and today-all rain. I went out to lunch with Josh, always a treat. He is more like a buddy than a child and we almost always get along. Later a friend and I went out too to a nice restaurant in Saline where I had stuffed with goat cheese and veggies portabellos on a bed of spinach with roasted red pepper sauce. Tasty. We then watched more Botswanian TV-The Ladies' No. 1 Detective Agency.
Some of the seeds I planted Wednesday are already germinated and the resulting plants are growing faster than my hair.
Today is the fifth anniversary of my father's death setting in motion, particularly in the first year, a series of events resulting in extreme stress. If stress causes cancer-that would be the smoking gun. I need to cash some estate income tax checks today and that will be the end of a long journey.
Someone gave me a paper yesterday on how bisphosphonates might prevent leukemia-a 'common' side effect of radiation. Of course they didn't define what common meant but in my book, it means more than 50% when in reality, the risk of radiation induced cancers (mainly sarcoma) is less than 0.5% (source-Susan Love). All these studies were done in mice.
When I am in NYC in a couple of weeks, there will be a breast cancer run/walk in Central Park that my brother-in-law's girlfriend said she's doing partly in my honor. Still deciding if to join her.
As I entered the rad building today, a young woman approached me saying I looked familiar. Turns out she ran the coffee kiosk outside my lab and would make me lattes. Argh! She's too young for this mess! I'm too young for this stuff too. In the waiting room, it was just us three: A, M and me-the positives about this treatment though I will still see M in my LiveStrong class. One more zapping.
Yesterday and today-all rain. I went out to lunch with Josh, always a treat. He is more like a buddy than a child and we almost always get along. Later a friend and I went out too to a nice restaurant in Saline where I had stuffed with goat cheese and veggies portabellos on a bed of spinach with roasted red pepper sauce. Tasty. We then watched more Botswanian TV-The Ladies' No. 1 Detective Agency.
Some of the seeds I planted Wednesday are already germinated and the resulting plants are growing faster than my hair.
Today is the fifth anniversary of my father's death setting in motion, particularly in the first year, a series of events resulting in extreme stress. If stress causes cancer-that would be the smoking gun. I need to cash some estate income tax checks today and that will be the end of a long journey.
Sunday, April 19, 2009
Dude-where's my hair?
I have only one lower eyelash and now my upper lashes are starting to shed-I thought I'd get to keep those but noticing last night that half of them were indeed gone sent me into another depression. I have a few stray hairs where my eyebrows used to be. When I was a girl scout many years ago, I was fascinated by my leader's single line penciled in eyebrows. She was probably 10-20 years younger than I am now. She said she had plucked them in the 40s and they never grew back. Argh! Am I destined to be hairless?I do have a few mm of blonde hair on parts of my scalp that is growing at glacial pace, if it is indeed growing. I rub in that hair growth stuff Marilyn gave me. If anything, it keeps my scalp from drying out.
I am not sure how much weight I gained as I have not looked at the scales but most of the weight is concentrated in my gut, which is just gross. It may just be water weight still from the steroids and Taxol as my fingers are still puffy but I want it gone.
On a positive note, I did run much better today covering almost 4 miles. Josh will take me out to lunch in a bit.
I am not sure how much weight I gained as I have not looked at the scales but most of the weight is concentrated in my gut, which is just gross. It may just be water weight still from the steroids and Taxol as my fingers are still puffy but I want it gone.
On a positive note, I did run much better today covering almost 4 miles. Josh will take me out to lunch in a bit.
Saturday, April 18, 2009
Why blog?
I started this blog while I was in Italy to keep a record of my experiences there and to send my friends pictures of the places I've been. Soon after I returned, I found my tumor or rather the mammogram found it (I could never feel it) so I resumed my blog to record what I am going through. It is not a diary: there is alot that I am going through that I don't write about due to privacy issues but rather what a woman experiences as she goes through breast cancer. I have learned alot from others' blogs and hope others learn from mine. The downside of blogging is that others learn what I am up to but I don't know what is going on in their lives.
It is almost 80 here but almost no humidity. I sweat so much less now-must be a side effect of the drugs. Running was a little easier today. I really don't like looking the way I do. Hopefully in a few months I won't look so much like the Michelin woman-bald, puffy and white.
Lazy days. I spent a pleasant evening with Brenda on her deck with her 3 grandkids with her herd of deer-about 8 of them-regularly making their rounds through her yard. In 2 weeks, I will get to be with my own Oliver. I slept almost ten hours with disturbing dreams-the old back in college dream where I have to write a paper for the final but I can barely understand the question and I had missed so many classes. I try to read my illegible notes but they aren't helpful and I am panicking. I wake up-reassure myself that I don't need to write any paper but then I fall asleep right back into that annoying situation.
It is almost 80 here but almost no humidity. I sweat so much less now-must be a side effect of the drugs. Running was a little easier today. I really don't like looking the way I do. Hopefully in a few months I won't look so much like the Michelin woman-bald, puffy and white.
Lazy days. I spent a pleasant evening with Brenda on her deck with her 3 grandkids with her herd of deer-about 8 of them-regularly making their rounds through her yard. In 2 weeks, I will get to be with my own Oliver. I slept almost ten hours with disturbing dreams-the old back in college dream where I have to write a paper for the final but I can barely understand the question and I had missed so many classes. I try to read my illegible notes but they aren't helpful and I am panicking. I wake up-reassure myself that I don't need to write any paper but then I fall asleep right back into that annoying situation.
Friday, April 17, 2009
Rad waiting room
There is a free parking lot outside the rad building for those with a special hang tag. Parking at the UM hospital system is very frustrating and expensive usually. We ended up paying more than $200 in parking fees when Shanna was a patient almost 20 years ago. The orthopedic clinic that treated me when I broke my arm was in the main hospital. Even getting the parking ticket was a pain as I had no use of my left arm and had to get out of the car to get it out of the machine with my right arm. I usually had to troll through several levels before I found a spot and it was expensive. But for cancer patients getting infusions, top price 50 cents for the day and rad patients are free. Today all the spots were filled-unusual early in the morning except one that had an inch to spare squeezing in-a bad sign. The rad waiting room was full-another bad sign. Two machines were down. Fortunately there were interesting patients today-my pals Mary and Ann who have appointments before me (but were taken after me) and several others. Lots of time today to learn their stories. The most bizarre was a man my age with Stage 4 larynx cancer. He got it from his mom who died of cervical cancer when he was ten. Huh? Cervical cancer of the throat? Yep, the virus that caused her cancer was transmitted to him during childbirth and it took this long to turn into something. Hopefully Gardisil will cut down cases like this in the future.
It was very pretty out and I went for a run along the river after my zapping. I didn't have much energy but it was nice watching the swans fight while I took my walking breaks from the running.
Naomi is still on spring break and begs for the car every day. She also figured that since she's 18 now, she could do anything she wants. She now thinks it would be cool to dye her hair brown.
My plans for the day? Laze around in the sun then go over to Brenda's and laze around with her.
It was very pretty out and I went for a run along the river after my zapping. I didn't have much energy but it was nice watching the swans fight while I took my walking breaks from the running.
Naomi is still on spring break and begs for the car every day. She also figured that since she's 18 now, she could do anything she wants. She now thinks it would be cool to dye her hair brown.
My plans for the day? Laze around in the sun then go over to Brenda's and laze around with her.
Thursday, April 16, 2009
I love spring!
Finally it is somewhat warm and sunny. I planted numerous seeds in peat pots (cosmos-several kinds, zinnias, morning glory, moss roses) so I have something other than my hair to watch grow. My geraniums have been doing very well inside so I cut them down, put the stems in potting soil to make even more plants.
Can't wait for radiation to be over. Still I have only minimal side effects but it is aggravating to wait there for no reason. It is interesting talking to my fellow patients-all of whom drive much farther to get here. I will miss Ann who I see every day.
I think I'll go out and enjoy the sun.
Can't wait for radiation to be over. Still I have only minimal side effects but it is aggravating to wait there for no reason. It is interesting talking to my fellow patients-all of whom drive much farther to get here. I will miss Ann who I see every day.
I think I'll go out and enjoy the sun.
Wednesday, April 15, 2009
Radiation annoyances
Unlike the infusion rooms, there are no volunteers trolling the radiation rooms offering chocolates and massages. The waiting room is fairly stark replete with 5 year old dog-earred magazines. We check ourselves in on a computer, change into our gowns with missing ties, and then wait. I am assigned to Machine 4, which has a lighted scene of the Grand Tetons (named by the French using a slang term for breasts-ha!) on the ceiling for me to stare at. Occasionally I am shuffled to other rooms instead-one that has a scene of the tulip festival or another with no scenery pictures but a CD player that yesterday played Tony Bennett hits. I know the other people assigned to Machine 4 (there may be 6 or 7 machines-hard to tell). I arrived on time yesterday and waited and waited. Two people assigned to my machine who have later appointments were taken before me. WTF! I go up to the front desk to make sure I checked in properly-I did. What's the deal? I've been waiting for an hour? The clerk just shrugs. Finally it's my turn and I go to the Tony Bennett machine instead. I ask about how they determine who goes first as there seems to be no system at all here. They mumbled something about how they were actually going to take me early on another machine but that didn't work out but I was no longer in queue for my original machine and then there were problems with this machine..blah, blah. I said there should be some way of telling the patient what is going on and how little we seem to be respected here. In a week I will be finished. I considered just walking out yesterday as I had completed 10/16 treatments. Who knows the magic number? I have yet to see in numbers how radiation helps when one has had chemo. I see numbers only if you didn't have chemo. My breast is hurting more and more and now I have an open sore because I forgot to slather Aquaphor on before going on the elliptical trainer yesterday (I am careful when I run).
I did get a bill for the 2 hours spent on the simulation day-over $10,000. This does not include the rad onc charges.
It rained all day. It was hard to find a moment to let out poor Spud who refuses to perform in the rain. I wasn't going to run anyway as I had my LiveStrong class plus I was very tired. Naomi came as my guest and worked out for a half hour then wanted to eat. I said that I still have my class plus I drove Marilyn so she would just have to tough it out. Marilyn gave me some special hair stimulator substance that her sister sent her. I guess it can't hurt. My scalp feels like my legs do after 2 days of not shaving. I last shaved my legs on Dec. 1 but they are as smooth as if I had shaved an hour ago. The leg, armpit, and moustache hair can never come back as far as I am concerned but I do want my eyelashes and head hair back. Still no oil glands working anywhere. I need to slather lotion all over me daily. Also I have no ear wax and the poisonous apocrine glands have dried up. I could live without those substances too. I wonder what other substances my body is no longer making? Digestive enzymes? Hormones? Blood cells? Who knows? My finger nails seem to growing quickly. One-third is healthy growth then I have the white streaked brown tinted area. The nailbeds hurt sometimes and it feels like if I am not careful, the nail will just fall off. Marilyn lost another nail this week and she hasn't had any poisons since March 1.
I did get a bill for the 2 hours spent on the simulation day-over $10,000. This does not include the rad onc charges.
It rained all day. It was hard to find a moment to let out poor Spud who refuses to perform in the rain. I wasn't going to run anyway as I had my LiveStrong class plus I was very tired. Naomi came as my guest and worked out for a half hour then wanted to eat. I said that I still have my class plus I drove Marilyn so she would just have to tough it out. Marilyn gave me some special hair stimulator substance that her sister sent her. I guess it can't hurt. My scalp feels like my legs do after 2 days of not shaving. I last shaved my legs on Dec. 1 but they are as smooth as if I had shaved an hour ago. The leg, armpit, and moustache hair can never come back as far as I am concerned but I do want my eyelashes and head hair back. Still no oil glands working anywhere. I need to slather lotion all over me daily. Also I have no ear wax and the poisonous apocrine glands have dried up. I could live without those substances too. I wonder what other substances my body is no longer making? Digestive enzymes? Hormones? Blood cells? Who knows? My finger nails seem to growing quickly. One-third is healthy growth then I have the white streaked brown tinted area. The nailbeds hurt sometimes and it feels like if I am not careful, the nail will just fall off. Marilyn lost another nail this week and she hasn't had any poisons since March 1.
Tuesday, April 14, 2009
It's a boy!
My second grandchild will be a boy due 9-11! It took just one second to determine this by ultrasound. A small part of me is disappointed that Shanna will never get the joy of dealing with a teenage girl but that's the mean part of me hoping for revenge. The boys will be close in age and hopefully will be good buddies. I will go to Boston is a few weeks after the Long Island wedding and see my precious grandson. Meanwhile the cute pink outfit Donna gave my theoretical granddaughter will wait. This will ensure J&J having boys also when they get around to having a family. Naomi hopefully will wait for years but one of her best friends will have one in June.
Soon I will graduate into the 'survivorship' phase of Cancerland. I've been told it isn't that much fun. Lingering side effects of the treatment plus lots of fatigue with no clear explanation and the expectation that you are now cured so you should have no excuse for not being your old self.
The biggest fear is that of metastasis: for those with TNBC, it happens sooner than later within the first 3 years after diagnosis. The sooner it happens, the more grave the situation. My onc doesn't believe in screening for this and just waits for symptoms. The screens miss alot and cause needless anxiety. What they do check for are local recurrences every 3 months. I was trying to get straight from the rad onc fellow whether recurrences are more common with TNBC. He had no idea. I have read that most recurrences are detected by the patient herself but since I couldn't ever feel my tumor despite its size and closeness to the skin and knowing where it was, I don't hold much hope that I could feel another tumor. If I do have a local recurrences, they would recommend a mastectomy as one can not do radiation to the same area twice. They also would recommend chemo. Going through that again would be so awful.
Soon I will graduate into the 'survivorship' phase of Cancerland. I've been told it isn't that much fun. Lingering side effects of the treatment plus lots of fatigue with no clear explanation and the expectation that you are now cured so you should have no excuse for not being your old self.
The biggest fear is that of metastasis: for those with TNBC, it happens sooner than later within the first 3 years after diagnosis. The sooner it happens, the more grave the situation. My onc doesn't believe in screening for this and just waits for symptoms. The screens miss alot and cause needless anxiety. What they do check for are local recurrences every 3 months. I was trying to get straight from the rad onc fellow whether recurrences are more common with TNBC. He had no idea. I have read that most recurrences are detected by the patient herself but since I couldn't ever feel my tumor despite its size and closeness to the skin and knowing where it was, I don't hold much hope that I could feel another tumor. If I do have a local recurrences, they would recommend a mastectomy as one can not do radiation to the same area twice. They also would recommend chemo. Going through that again would be so awful.
Monday, April 13, 2009
Stubble
I finally have some mm long stubble on the top of my head. It looks blonde and is not uniformly distributed but it is a start. Still I have some edema-very swollen hands and a puffy belly. I assume this is due to my friend Taxol which I haven't had in 5 weeks.
My hyacinths and daffodils are beginning to bloom. We had Easter Brunch with Josh, Julia and her sister Nicole. Julia had a nice spread of very tasty food. All I contributed was mango cold soup.
Later today Shanna has her ultrasound. Hopefully the baby will give us a sneak peak.
Today's cancer news was how Herceptin helps women with metastatic breast cancer even though their primary tumor was her2 neg. Two main explanations: 31% of her2 neg primaries convert to her2+ in distal sites and that Herceptin helps the true negatives also. See:
http://www.cancernetwork.com/display/article/10165/1314209?pageNumber=1
Lesson learned: If this nasty tumor ever reappears, Herceptin might be of value.
Also an interesting paper on basic tumor biology is that some scientists have found that blocking certain genes stops Ca from entering the tumor cells thus stopping metastasis. This is a long way from becoming a drug as this is only working in animal studies but it is a good first step.
My tenth treatment today. The onc thinks I am holding up well. I ran down by the river later facing a very strong wind in one direction. Hard to get this water-laden body going..
Naomi being able to drive has added a new level of irritation to my life. She didn't come home last night at the time promised making me stay up late waiting. Then she brought home a friend without asking permission. We definitely need an attitude readjustment here.
My hyacinths and daffodils are beginning to bloom. We had Easter Brunch with Josh, Julia and her sister Nicole. Julia had a nice spread of very tasty food. All I contributed was mango cold soup.
Later today Shanna has her ultrasound. Hopefully the baby will give us a sneak peak.
Today's cancer news was how Herceptin helps women with metastatic breast cancer even though their primary tumor was her2 neg. Two main explanations: 31% of her2 neg primaries convert to her2+ in distal sites and that Herceptin helps the true negatives also. See:
http://www.cancernetwork.com/display/article/10165/1314209?pageNumber=1
Lesson learned: If this nasty tumor ever reappears, Herceptin might be of value.
Also an interesting paper on basic tumor biology is that some scientists have found that blocking certain genes stops Ca from entering the tumor cells thus stopping metastasis. This is a long way from becoming a drug as this is only working in animal studies but it is a good first step.
My tenth treatment today. The onc thinks I am holding up well. I ran down by the river later facing a very strong wind in one direction. Hard to get this water-laden body going..
Naomi being able to drive has added a new level of irritation to my life. She didn't come home last night at the time promised making me stay up late waiting. Then she brought home a friend without asking permission. We definitely need an attitude readjustment here.
Sunday, April 12, 2009
Happy Easter!
A sign that doesn't have much to do with Easter but has to do with patient care in general. I wonder how many complaints they get that their care was not 'very good'. From the site below.
Easter card received yesterday from Lesa of LittleLifePreservers.com. There is glitter on the bunny's scarf and the stamp is hand-colored. Very cute.
From one of my favorite sites: The blog of unnecessary quotation marks (http://www.unnecessaryquotes.com/) Apparently the sign maker thinks the 'real' Easter will be next week when the Eastern Orthodox celebrate it.
So it is finally spring. I spent some time clearing out dead growth around my patio yesterday then sitting in the sun doing my puzzles. Today we are going to Josh and Julia's for brunch.
New favorite show, No. 1 Ladies' Detective Agency, set in Botswana featuring feisty women out to set the world straight. Good scenery, interesting characters, well-acted, suitable for children as there is little violence, etc. I highly recommend it.
So to all my BC and non-BC friends in cyberspace, I wish you all a Happy Easter!
Saturday, April 11, 2009
Recovery
I have a brief respite from being fried on the weekends. Still my symptoms from radiation are mild-just occasional breast pain and some shrinkage around my scar. I also now have a dry cough which could be due to radiation. They insist that only a small section of my lung is being zapped. I cover the breast with Aquaphor before running as I do not want to have any chafing sores that I've had in the past. Running is getting easier and easier maybe as my anemia goes away. I no longer have nose bleeds. Still no new hair growth and I am down to FIVE total bottom eyelashes.
Sharon, my blogger friend, had her last radiation yesterday. She's finally done after 9 months of treatments. In ten days, I will be also. Yay for us!
I had a nice lunch with Josh yesterday. His wife is preparing Easter Brunch for us tomorrow morning. I just have one dish to prepare. I also had a good talk with Shanna who just had seen her ob-gyn. All seems fine with the baby whose sex hopefully will be unveiled Monday. We have a wedding on Long Island the first weekend in May. Afterwards, I'll go to Boston. Meanwhile a few of the moms will be in NYC also so maybe Sunday, we'll all meet up. Last night a friend came over and we shared some wine and cannoli. I have cut down on my drinking considerably from nothing during chemo to once a week now.
It will be so nice to be out of Cancerland. So much of my life for the past 7 months has revolved around cancer issues, it will be nice to have my old life back. I've been practicing my Italian in the car when I am alone. One of the phrases I was repeating yesterday was Sono un avvocato which sounded pretty much like I am an avocado but no, it means lawyer. Avocados are the same in Italian, English and Spanish derived from the Mayan word for 'testicles'.
Sharon, my blogger friend, had her last radiation yesterday. She's finally done after 9 months of treatments. In ten days, I will be also. Yay for us!
I had a nice lunch with Josh yesterday. His wife is preparing Easter Brunch for us tomorrow morning. I just have one dish to prepare. I also had a good talk with Shanna who just had seen her ob-gyn. All seems fine with the baby whose sex hopefully will be unveiled Monday. We have a wedding on Long Island the first weekend in May. Afterwards, I'll go to Boston. Meanwhile a few of the moms will be in NYC also so maybe Sunday, we'll all meet up. Last night a friend came over and we shared some wine and cannoli. I have cut down on my drinking considerably from nothing during chemo to once a week now.
It will be so nice to be out of Cancerland. So much of my life for the past 7 months has revolved around cancer issues, it will be nice to have my old life back. I've been practicing my Italian in the car when I am alone. One of the phrases I was repeating yesterday was Sono un avvocato which sounded pretty much like I am an avocado but no, it means lawyer. Avocados are the same in Italian, English and Spanish derived from the Mayan word for 'testicles'.
Friday, April 10, 2009
All triple negative tumors are not created equal..
An on-going frustration I have with the whole cancer experience is how little is known (by me at least) about my tumor's characteristics. At a presurgical check-up, I signed away the rights to my tumor for "research purposes". If I did not, it would be thrown in the medical waste can or if I insisted, I could take it home with me to torture or put it on display. Hey, wanna see my tumor? I asked if this research would benefit me? The nurse coldly looked at me and said No but it might benefit mankind. It bothers me that some researcher has part of my tumor somewhere checking out all these factors and waiting to see if I live or die so I could be included in some research paper. To me, it seems unethical that they MIGHT have some info about my prognosis that they aren't sharing with me. True, there might not be anything I could do about this info but maybe I could.When I worked on a cancer project many years ago, one of our screens were to test compounds of interest against L1210 cells named from Linda, the leukemia patient who had long ago died but her cells lived on. Maybe someday, there will be a strain of SRK cells.
Today I found two papers of possible interest to TNBC patients. The first is that there is a commerical company ready to market a test to see if your tumor will be killed by Taxol. Of the 94 TNBC tumors, they predicted accurately that half would be wiped out by Taxol. The tumors they predicted would not be helped by Taxol indeed largely were not. See:http://www.devicespace.com/news_story.aspx?StoryID=133671&full=1
Of course it would be depressing to hear that Taxol won't do you a bit of good, which brings me to paper number 2: http://www.washingtonpost.com/wp-dyn/content/article/2009/04/09/AR2009040903367.html?hpid=opinionsbox1
Apparently tumors themselves have stem cells-a theory developed here at UM. If the tumor itself is comprised of stem cells, it is very resistant to chemo and/or radiation and will probably spread. I suspect a good portion of these theoretical stem cell tumors are TNBC. But now, they found something that kills these tumors, a reovirus that allegedly is harmless otherwise. So as a last resort, patients could be infected with this virus-their stem cell tumors killed and everyone lives happily ever after.
This reminds me of a movie I saw a few months ago I am Legend. Naomi had warned me that this movie was very sad as SPOILER ALERT a very cute German Shepherd looking just like Sunny is killed. The premise of the movie is, get this, a cure for breast cancer is developed using what is thought to be a harmless virus but, no it isn't harmless. If one is infected with it, one turns into a flesh eating zombie and quickly everyone is infected except Will Smith who is feverishly trying to find a cure.
I lost 3 bottom eye lashes today. Sounds petty, doesn't it but this represents a good portion of what I have left. And to put a cherry on a shit sundae, a radiation machine was down so I waited with boring, unfriendly patients for an hour for my treatment today.
I am sore due to muscle overuse from the weight machines yesterday. I have trying to wean myself from Prilosec as I am almost out but then heartburn returned with a vengence. This I blame on the Red Devil. I asked the rad onc for it and was told No even though it would take 2 secs to write one. Maybe she thinks I'm copping scripts from all my docs so I can have one big Prilosec party.
Today I found two papers of possible interest to TNBC patients. The first is that there is a commerical company ready to market a test to see if your tumor will be killed by Taxol. Of the 94 TNBC tumors, they predicted accurately that half would be wiped out by Taxol. The tumors they predicted would not be helped by Taxol indeed largely were not. See:http://www.devicespace.com/news_story.aspx?StoryID=133671&full=1
Of course it would be depressing to hear that Taxol won't do you a bit of good, which brings me to paper number 2: http://www.washingtonpost.com/wp-dyn/content/article/2009/04/09/AR2009040903367.html?hpid=opinionsbox1
Apparently tumors themselves have stem cells-a theory developed here at UM. If the tumor itself is comprised of stem cells, it is very resistant to chemo and/or radiation and will probably spread. I suspect a good portion of these theoretical stem cell tumors are TNBC. But now, they found something that kills these tumors, a reovirus that allegedly is harmless otherwise. So as a last resort, patients could be infected with this virus-their stem cell tumors killed and everyone lives happily ever after.
This reminds me of a movie I saw a few months ago I am Legend. Naomi had warned me that this movie was very sad as SPOILER ALERT a very cute German Shepherd looking just like Sunny is killed. The premise of the movie is, get this, a cure for breast cancer is developed using what is thought to be a harmless virus but, no it isn't harmless. If one is infected with it, one turns into a flesh eating zombie and quickly everyone is infected except Will Smith who is feverishly trying to find a cure.
I lost 3 bottom eye lashes today. Sounds petty, doesn't it but this represents a good portion of what I have left. And to put a cherry on a shit sundae, a radiation machine was down so I waited with boring, unfriendly patients for an hour for my treatment today.
I am sore due to muscle overuse from the weight machines yesterday. I have trying to wean myself from Prilosec as I am almost out but then heartburn returned with a vengence. This I blame on the Red Devil. I asked the rad onc for it and was told No even though it would take 2 secs to write one. Maybe she thinks I'm copping scripts from all my docs so I can have one big Prilosec party.
Thursday, April 9, 2009
Watch out! Naomi is on the road!
On Tuesday, Naomi passed her road test even though she made a right turn on red while a car was making a left turn into the same space and she was unable to smoothly back into a parking space. Yesterday she got her long awaited driver's license and promptly wanted to go 'solo' to a friend's house 3 miles away. I worry so much about her judgement. I knew at 16, she could not be trusted nor do I believe many 16 year olds have the maturity to drive. Just the other day, we were out practicing and pulled along the side of a friend of hers. Naomi was eager to show her friend that finally she was driving and started honking. But to her chagrin, her friend didn't look up as she was too busy texting!! And she seemed to be still looking down after the light changed!
There have been too many examples here of kids dying that should not have on the road. A girl born the same week as Shanna with just 2 months of driving under her belt decided one day that she just had to see her boyfriend in Madison WI and tried to drive there and back on the same day. She crossed the center line of 1-94 just 15 miles short of Ann Arbor killing herself and a college student driving in the opposite direction. The next day Shanna went looking for her as they were doing a project together and was told that she was dead. I get this tearful phone call dead, couldn't help it, car, come here now! and I immediately assumed Shanna had run someone over.
Of course there are many adults I think that shouldn't be driving too. I am reminded of this daily as I make it through the North Campus section full of new adult drivers who came from non-car cultures. Anyway, another thing for me to worry about but I do have to let her grow up. But as a plus, the car will be a good carrot for modifying behavior. Steve managed to get her to clean the room before the license could be obtained.
It finally seems to be spring. I saw daffodils today and a purple finch yesterday. My favorite wildlife sighting was a snow laden tree Monday with 3 huge vultures perched in it. I had planted my pansies Saturday before knowing the snow was coming but they seemed to have survived. My 3 mile run was easier than the other day so that's some progress. I was able to sit for a while at an outside table in the sun comfortably before visiting Brenda yesterday afternoon.
8 treatments finished; 8 to go! So far, I feel fine. Noone at all in the waiting room today except for Ann who came to visit with me. Yesterday a young Middle Eastern woman who usually is there with her husband was crying. I assume the husband is there as an interpetor. I wonder how she handles the modesty requirement as so many of the rad techs are men.
I did go to the support group at UM last night. The same older ladies were there but it is hard to relate to them. A 30ish mom was there for the first time though she has finished treatment. BC has robbed her of the opportunity of having more than one child. Evil disease!
There have been too many examples here of kids dying that should not have on the road. A girl born the same week as Shanna with just 2 months of driving under her belt decided one day that she just had to see her boyfriend in Madison WI and tried to drive there and back on the same day. She crossed the center line of 1-94 just 15 miles short of Ann Arbor killing herself and a college student driving in the opposite direction. The next day Shanna went looking for her as they were doing a project together and was told that she was dead. I get this tearful phone call dead, couldn't help it, car, come here now! and I immediately assumed Shanna had run someone over.
Of course there are many adults I think that shouldn't be driving too. I am reminded of this daily as I make it through the North Campus section full of new adult drivers who came from non-car cultures. Anyway, another thing for me to worry about but I do have to let her grow up. But as a plus, the car will be a good carrot for modifying behavior. Steve managed to get her to clean the room before the license could be obtained.
It finally seems to be spring. I saw daffodils today and a purple finch yesterday. My favorite wildlife sighting was a snow laden tree Monday with 3 huge vultures perched in it. I had planted my pansies Saturday before knowing the snow was coming but they seemed to have survived. My 3 mile run was easier than the other day so that's some progress. I was able to sit for a while at an outside table in the sun comfortably before visiting Brenda yesterday afternoon.
8 treatments finished; 8 to go! So far, I feel fine. Noone at all in the waiting room today except for Ann who came to visit with me. Yesterday a young Middle Eastern woman who usually is there with her husband was crying. I assume the husband is there as an interpetor. I wonder how she handles the modesty requirement as so many of the rad techs are men.
I did go to the support group at UM last night. The same older ladies were there but it is hard to relate to them. A 30ish mom was there for the first time though she has finished treatment. BC has robbed her of the opportunity of having more than one child. Evil disease!
Wednesday, April 8, 2009
Cancer modesty
I was going to title this post 'modesty' but many of you would just snort and think to yourselves, 'That Sue, she may be many things but modest isn't one of them". Yeah, I'm working on that. Nor in general have I been in the past too modest about my body, whatever shape it has been in much to my children's embarrassment. Forty pounds ago, I would run in the heat with just a running bra on top. I don't hide behind curtains in locker rooms and annoyed somewhat by people who do as they hogged up valuble shower stall space. Every day for the past week, I've let strangers, up to 3 a day, peer at and touch my misshapen breast-half of them men, in the rad room and I don't bat an eye. But where I draw the line, is my bald head. Noone is going to see it.
Yesterday at my LiveStrong program, a classmate told me I really should consider going natural as she did at one point. I said I will never be ready to do that. She wondered if I had a misshaped head. No I don't think so-I have baby pix of me with only a few mm of hair and my head shape looked fine. I was the only one to show up to class with a wig. It was very hot trying to exercise with it on so now I am using my pink fuzzy hat. From a distance, it looks like a hot pink fuzzy afro and some people thought it was my real hair. Steve wanted to take a picture of my head for some reason so I could remember this experience. I didn't take pictures of the childbirth damages to certain body parts even though they were quite impressive. Hopefully this baldness will soon pass. Marilyn who is 10 days ahead of me in treatment finally saw some stubble this weekend and new eyelashes. Her remaining eyebrow hairs sadly fell out at the same time. Not that I will have hair the same time as she did but there's hope that next week I can have my own layer of fuzz. Her fingers still are numb giving her problems trying to sew.
As for cross cultural modesty, about ten years ago I attended an international chemistry conference in Bozeman, MT. The international chemists were mainly Eastern European. For a social event, we took a white water raft trip up the Yellowstone River (it flows north, which seemed strange to me)together. We were advised to bring a second set of clothes as we would get wet. The Americans huddled behind makeshift tents of towels in their bus seats trying to change clothes without exposing their bodies. Not the Europeans-they stripped down outside in full view of everyone. Quite the contrast!
We mainly did weights yesterday in the LiveStrong class. Despite the neglect of my muscles, I did well. Still can't stand on one foot for more than a few seconds though.
Yesterday at my LiveStrong program, a classmate told me I really should consider going natural as she did at one point. I said I will never be ready to do that. She wondered if I had a misshaped head. No I don't think so-I have baby pix of me with only a few mm of hair and my head shape looked fine. I was the only one to show up to class with a wig. It was very hot trying to exercise with it on so now I am using my pink fuzzy hat. From a distance, it looks like a hot pink fuzzy afro and some people thought it was my real hair. Steve wanted to take a picture of my head for some reason so I could remember this experience. I didn't take pictures of the childbirth damages to certain body parts even though they were quite impressive. Hopefully this baldness will soon pass. Marilyn who is 10 days ahead of me in treatment finally saw some stubble this weekend and new eyelashes. Her remaining eyebrow hairs sadly fell out at the same time. Not that I will have hair the same time as she did but there's hope that next week I can have my own layer of fuzz. Her fingers still are numb giving her problems trying to sew.
As for cross cultural modesty, about ten years ago I attended an international chemistry conference in Bozeman, MT. The international chemists were mainly Eastern European. For a social event, we took a white water raft trip up the Yellowstone River (it flows north, which seemed strange to me)together. We were advised to bring a second set of clothes as we would get wet. The Americans huddled behind makeshift tents of towels in their bus seats trying to change clothes without exposing their bodies. Not the Europeans-they stripped down outside in full view of everyone. Quite the contrast!
We mainly did weights yesterday in the LiveStrong class. Despite the neglect of my muscles, I did well. Still can't stand on one foot for more than a few seconds though.
Tuesday, April 7, 2009
Three week Canadian Study
Six down; ten to go. I seem to be the first person treated at UM with the 3 week course of radiation vs the usual 6 week course. I will receive 42 vs the usual 46 rads total giving me 2.66 rads x16 fractions with no boosts. So far so good except today I feel nausea and a little breast soreness. For info see http://www.nytimes.com/2008/09/23/health/research/23canc.html.
Yesterday my blog seemed unusually popular (150 hits vs the usual 25) but the phrase E****uake in Abr***o caused all the traffic. I will see if the stars cut down on it. Too bad I hadn't signed up for the 'monetize' option. If you put ads on your blog, you get paid by the number of hits. So lots of hits especially from Canada where many Italian immigrants settled from Abru**o as in the Detroit area. With the stat counter, I can tell what phrase was googled. Prior to yesterday," thyroid ablation "seemed to generate the most hits. "Naomi I moan" even generated a hit from someone looking for palindromes. But 'triple negative' has led many to this blog.
The death toll from the Terremoto (earthquake) continues to climb. Word from Gagliano and Castelvecchio is that everyone is fine, just some minor structural damage although the monastery we stayed in last summer needs major repairs now. I hope my young friends from L'Aquila were untouched.
Naomi came with us for the buffet at WCC yesterday as the snow closed the schools. We had the place to ourselves. Such a good place, they really need to work on advertising. We then watched chick flicks together. The roads were too slippery for a run.
Yesterday my blog seemed unusually popular (150 hits vs the usual 25) but the phrase E****uake in Abr***o caused all the traffic. I will see if the stars cut down on it. Too bad I hadn't signed up for the 'monetize' option. If you put ads on your blog, you get paid by the number of hits. So lots of hits especially from Canada where many Italian immigrants settled from Abru**o as in the Detroit area. With the stat counter, I can tell what phrase was googled. Prior to yesterday," thyroid ablation "seemed to generate the most hits. "Naomi I moan" even generated a hit from someone looking for palindromes. But 'triple negative' has led many to this blog.
The death toll from the Terremoto (earthquake) continues to climb. Word from Gagliano and Castelvecchio is that everyone is fine, just some minor structural damage although the monastery we stayed in last summer needs major repairs now. I hope my young friends from L'Aquila were untouched.
Naomi came with us for the buffet at WCC yesterday as the snow closed the schools. We had the place to ourselves. Such a good place, they really need to work on advertising. We then watched chick flicks together. The roads were too slippery for a run.
Monday, April 6, 2009
Earthquake in Abruzzo!
Typical Abruzzese homes perched on the edge of a canyon. This is a scene from Castelvecchio, a town I would run down to this summer. The epicenter in today's earthquake some 20 K away was in Castelnuovo (new vs old).As some of you know, I spent 5 weeks last summer in Gagliano Aterno, a small mountain village in the Abruzzo region learning Italian. This village is exactly 12 miles from the epicenter (Castelnuovo) of the earthquake that hit very early this morning. Apparently there have been at least 9 little earthquakes there in the past year (news to me-I only knew it was an earthquake area when we spent a day in Celano (3 miles from the epicenter) when they kept saying this part of the castle was rebuilt in such and such a year after ...then they listed several earthquakes) The news seems to be centered around L'Aquila, the largest city in the region where the university that the Italian students came from for our program to teach them English. A dorm collasped leading to some of the 92 fatalities (and counting). I hope none of our students were among them. Lots of the buildings in these little towns were built on edges of cliffs. I can't imagine that they would survive an earthquake. While we were in Italy, various villages (Molina, Secinaro, Goriano {update: that church we visited now has a major crack in it-I found an Italian blogger: terremoto}, Vittorito, Castelvecchio) would host us at night feeding us. I imagined feeding Americans put quite the dent in their budget-these are not wealthy people. The chances that these villages came out unscathed is very slim.
There was 6-8 inches of very wet snow here this morning. No school for Ms. Naomi. No gas in the car as Steve loves to play gasoline roulette to see how far we can go on fumes. Even though we have lost at this game before and he knows how irritating I find it, still he will drain the car.
Every five days, they take extra x-rays so my session was quite long. A 2 year old was in the waiting room. They knock her out for her treatments. Her mom and grandmom were with her and have moved to Ann Arbor for her 8 months of treatments. How unfair cancer can be! I talked with the grandmom quite a bit.
There was 6-8 inches of very wet snow here this morning. No school for Ms. Naomi. No gas in the car as Steve loves to play gasoline roulette to see how far we can go on fumes. Even though we have lost at this game before and he knows how irritating I find it, still he will drain the car.
Every five days, they take extra x-rays so my session was quite long. A 2 year old was in the waiting room. They knock her out for her treatments. Her mom and grandmom were with her and have moved to Ann Arbor for her 8 months of treatments. How unfair cancer can be! I talked with the grandmom quite a bit.
Sunday, April 5, 2009
Stuff out there
Like most people dealing with cancer, I am trying to learn as much as possible about this hideous disease from a variety of sources: researchers, fellow cancer warriors, books, etc. I've learned alot from my fellow bloggers on what to expect in treatment. Some things just irritate me however even in scientific papers e.g. the use of the word lethal. This is a favorite word in the popular press- as in lethal heat wave, which is used when 3 elderly people die out of millions during a heat wave. I've come to expect it in articles in the popular press about TNBC but when I see it in scientific articles, it just makes me mad as they rarely define what exactly they mean by 'lethal' other than if all things being equal, TNBC is more lethal than non-TNBC.
Recently I was given a book which has in the title two words that do not belong together: sexy and cancer. Of course that may be just my opinion. I see nothing sexy about being completely hairless, being devoid of oil and other glands, having constant watery eyes and nose, etc. But that didn't make me the maddest: it was the section on an anti-cancer diet full of half and no truths. My favorite was the importance of keeping one's body alkaline versus acid. One way allegedly to tell if your body has the wrong acidity is to take the pH of your pee. If it is acid, you presumably have the wrong diet. The truth is if it is basic, it's due to ammonia and something inside of you is converting urea (acidic) to ammonia (basic)-probably bacteria or end stage renal failure. Also a section of the dangers of meat eating beyond the usual caveats concerning saturated fats, hormone and antibiotic infested flesh, I learned that meat presumbly gives off radioactivity and putrefies in your gut for almost a month. On what planet!
There are some funny things out there in cyber space such as a blog devoted to inappropriate use of quotation marks (see http://www.unnecessaryquotes.com/) and church signs (http://crummychurchsigns.blogspot.com/).
I resumed my running yesterday going almost 3 miles. My breast didn't hurt once the endorphins kicked in. The weather is going to be bad for the next few days. They are predicting a winter storm tonight that might dump 2 to 10 inches of snow. Yikes.
I dragged Steve to part of the Italian film festival to see "Hotel Meina" which was very loosely based on the Italian Holocaust. Up to 1943, Italy was a relatively safe haven for Jews but then the Italians surrendered to the Allies. This at first sounded like good news but the Nazis were free to come into Italy and do their evil. The movie was about a small hotel near the Swiss border where some Jews were vacationing in a hotel owned by a Turkish Jewish family. This hotel was the first place the Nazis came to after crossing the border and they took it over imprisonning the Jewish guests. As the owners had Turkish passports, they were exempted from the mess as Turkey was a neutral country. It was a sad and disturbing movie.
Recently I was given a book which has in the title two words that do not belong together: sexy and cancer. Of course that may be just my opinion. I see nothing sexy about being completely hairless, being devoid of oil and other glands, having constant watery eyes and nose, etc. But that didn't make me the maddest: it was the section on an anti-cancer diet full of half and no truths. My favorite was the importance of keeping one's body alkaline versus acid. One way allegedly to tell if your body has the wrong acidity is to take the pH of your pee. If it is acid, you presumably have the wrong diet. The truth is if it is basic, it's due to ammonia and something inside of you is converting urea (acidic) to ammonia (basic)-probably bacteria or end stage renal failure. Also a section of the dangers of meat eating beyond the usual caveats concerning saturated fats, hormone and antibiotic infested flesh, I learned that meat presumbly gives off radioactivity and putrefies in your gut for almost a month. On what planet!
There are some funny things out there in cyber space such as a blog devoted to inappropriate use of quotation marks (see http://www.unnecessaryquotes.com/) and church signs (http://crummychurchsigns.blogspot.com/).
I resumed my running yesterday going almost 3 miles. My breast didn't hurt once the endorphins kicked in. The weather is going to be bad for the next few days. They are predicting a winter storm tonight that might dump 2 to 10 inches of snow. Yikes.
I dragged Steve to part of the Italian film festival to see "Hotel Meina" which was very loosely based on the Italian Holocaust. Up to 1943, Italy was a relatively safe haven for Jews but then the Italians surrendered to the Allies. This at first sounded like good news but the Nazis were free to come into Italy and do their evil. The movie was about a small hotel near the Swiss border where some Jews were vacationing in a hotel owned by a Turkish Jewish family. This hotel was the first place the Nazis came to after crossing the border and they took it over imprisonning the Jewish guests. As the owners had Turkish passports, they were exempted from the mess as Turkey was a neutral country. It was a sad and disturbing movie.
Saturday, April 4, 2009
La mia notte italiana*
* My Italian night
Italian is a strange language with their use of a definite article with the possessive. The my night. At the Italian Film Festival last night I met a woman who said I could take lessons at a local Italian restaurant-the same one that donates our cancer lunches. Before the two movies,a friend and I ate at the Abruzziese restaurant Silvio's. Molto buono! Their manicotti are actually crepes stuffed with spinach and cheese. Later we returned between shows for tiramisu-also very good.
Last year the film series averaged about 5 people per film. Now they had 15-20. Maybe they need more publicity? I only knew of it from my film teacher of last summer as they had showed the same films at Wayne last week.
The first film -a documentary-L'orchestra di Piazzo Vittorio frankly didn't sound promising but we loved it. In part to combat anti-foreigner sentiment in a mixed nationality neighborhood in Rome, these musicians started an orchestra featuring the best artists from many different cultures, from Cuban, Gypsy, South American, Indian, Greek, Indian raga, Arab and African drums. They had to deal with no money, no common language, mistrust between certain ethnic groups, caste differences within the same ethnic group, visa problems, prima donnas, etc but they managed to put together a group of 21 to 30 artists (members come and go) that pooled their diverse talents and instruments to form a unique sound. Very good music! A taste (http://www.youtube.com/watch?v=V9xxMl12aPo&feature=related)
The second movie-a so-called black comedy- Notturno Bus was OK. I had promised my friend no depressing movies or violence and this was full of it though only the bad guys get killed. Both movies were set in Rome so the Italian spoken was somewhat understandable to me(as opposed to whatever was spoken in Gommora).
In my spare moments, I try to practice my Italian. When my cancer experience is over, I hope to return to Italy.
It was very windy and cold out yesterday. I took a day off from my exercise routine. No radiation today. Yay! I have no skin changes but the inside of my breast hurts. I went out to lunch with a good friend who gave me pretty pansies to plant.
Italian is a strange language with their use of a definite article with the possessive. The my night. At the Italian Film Festival last night I met a woman who said I could take lessons at a local Italian restaurant-the same one that donates our cancer lunches. Before the two movies,a friend and I ate at the Abruzziese restaurant Silvio's. Molto buono! Their manicotti are actually crepes stuffed with spinach and cheese. Later we returned between shows for tiramisu-also very good.
Last year the film series averaged about 5 people per film. Now they had 15-20. Maybe they need more publicity? I only knew of it from my film teacher of last summer as they had showed the same films at Wayne last week.
The first film -a documentary-L'orchestra di Piazzo Vittorio frankly didn't sound promising but we loved it. In part to combat anti-foreigner sentiment in a mixed nationality neighborhood in Rome, these musicians started an orchestra featuring the best artists from many different cultures, from Cuban, Gypsy, South American, Indian, Greek, Indian raga, Arab and African drums. They had to deal with no money, no common language, mistrust between certain ethnic groups, caste differences within the same ethnic group, visa problems, prima donnas, etc but they managed to put together a group of 21 to 30 artists (members come and go) that pooled their diverse talents and instruments to form a unique sound. Very good music! A taste (http://www.youtube.com/watch?v=V9xxMl12aPo&feature=related)
The second movie-a so-called black comedy- Notturno Bus was OK. I had promised my friend no depressing movies or violence and this was full of it though only the bad guys get killed. Both movies were set in Rome so the Italian spoken was somewhat understandable to me(as opposed to whatever was spoken in Gommora).
In my spare moments, I try to practice my Italian. When my cancer experience is over, I hope to return to Italy.
It was very windy and cold out yesterday. I took a day off from my exercise routine. No radiation today. Yay! I have no skin changes but the inside of my breast hurts. I went out to lunch with a good friend who gave me pretty pansies to plant.
Friday, April 3, 2009
Chemo side effects
I had my fitness evaluation yesterday at LiveStrong to assess my muscle strength, endurance, and balance. No comments were made about the muscles or endurance other than the patronizing 'good'. I assume both are better than most though not nearly what I had before chemo. But what really sucked was my balance. Allegedly one should be able to stand on one foot for a minute with ones leg bent behind one but I didn't last more than a few seconds. I fought the urge to cry or run out of there. A comment was made about how I should be able to do better than 'that' as I am not 'that old.' So chalk up another side effect of chemo.
We then worked on our machine of choice for aerobics-I was on the elliptical trainer. According to the lit up diagram, I was working selectively the gluts and quads so now I have sore quads. We then stretched-another thing I suck at. Next class-weight machines. I am glad I am taking the class as I like my co-students. One lady had BC twice in the exact place 18 years apart. As much as I complain about my nails with their white and brown streaks, they are of normal shape and length. Others have had them fall off or have very thick, yellow broken nails.
No chemo brain study today as the MRI broke again.
I've been taking it easy to avoid a cold that I thought I was getting. So far I have shook it off but Steve has it now. Today I was waiting in the small rad waiting room and this older woman was in there (she was waiting for her husband-she wasn't even a patient) noisily sucking up snot every 30 seconds. Delightful. If she could speak English, I would have requested that she should stay in the main waiting room and not spread her disease to rad patients. The other patient was spreading disinfectant noisily over himself hoping she'd take a hint and waited in the hallway to avoid her. Under the radiation machine, it is important to be very still for 15 minutes. I certainly don't want to worry about coughing or sneezing and then getting some other body part fried instead. I did have a cold the day I had my amnio with Ms. Naomi and fretted that I would cough at the wrong moment and she would be impaled by the needle.
I am 25% finished and now get a 2 day reprieve. Still just some minor soreness.
It turns out that I am not the only blogger in the house but I am not allowed to see this blog. Hardly seems fair.
Warm and sunny yesterday as opposed to cold and rainy today. I went out last night for dinner with some of the moms but passed on the movie at the 'cheapies' as I saw it (The Reader) in Seattle. I did get Naomi's broken iPod fixed for free. Yay!
We then worked on our machine of choice for aerobics-I was on the elliptical trainer. According to the lit up diagram, I was working selectively the gluts and quads so now I have sore quads. We then stretched-another thing I suck at. Next class-weight machines. I am glad I am taking the class as I like my co-students. One lady had BC twice in the exact place 18 years apart. As much as I complain about my nails with their white and brown streaks, they are of normal shape and length. Others have had them fall off or have very thick, yellow broken nails.
No chemo brain study today as the MRI broke again.
I've been taking it easy to avoid a cold that I thought I was getting. So far I have shook it off but Steve has it now. Today I was waiting in the small rad waiting room and this older woman was in there (she was waiting for her husband-she wasn't even a patient) noisily sucking up snot every 30 seconds. Delightful. If she could speak English, I would have requested that she should stay in the main waiting room and not spread her disease to rad patients. The other patient was spreading disinfectant noisily over himself hoping she'd take a hint and waited in the hallway to avoid her. Under the radiation machine, it is important to be very still for 15 minutes. I certainly don't want to worry about coughing or sneezing and then getting some other body part fried instead. I did have a cold the day I had my amnio with Ms. Naomi and fretted that I would cough at the wrong moment and she would be impaled by the needle.
I am 25% finished and now get a 2 day reprieve. Still just some minor soreness.
It turns out that I am not the only blogger in the house but I am not allowed to see this blog. Hardly seems fair.
Warm and sunny yesterday as opposed to cold and rainy today. I went out last night for dinner with some of the moms but passed on the movie at the 'cheapies' as I saw it (The Reader) in Seattle. I did get Naomi's broken iPod fixed for free. Yay!
Thursday, April 2, 2009
Fry Baby
I really don't like radiation. True there are no needles, no poisonous chemicals but damages are silently occurring. Each day I go to a different room with different technicians. The technician du jour seems like she never smiled in her life. You lie on the slab while they adjust you (Lie Heavy!Don't Help!). But you are always aligned somewhat differently so they have to take numerous x-rays to realign you. No lead shields over my reproductive organs-nada! I am zapped 4 times in the actual radiation that might take all of 2 minutes. 3 down-13 to go. I was sore the first day but only if I bump my breast does it hurt now. My blog pal Sharon has been fried to a crisp after 25 treatments such that her skin has peeled off leaving her raw and in alot of pain.
Radiation is for 'local' control. Apparently they can never be sure that they got all of the cancerous cells out-there's often little satellites. Mets are a more dangerous problem so that's why chemo is usually first to deal with any cells that might have escaped the breast. Chemo doesn't do well inside the breast but radiation does. If I had had a mastectomy, I probably would not need radiation but some people have tumors close to the chest wall that still might have pieces despite removing the majority of the breast.
Apparently my cousin's child Nadine has a role in the remake of Beverly Hills 90201 (forgot exact zip code) Very pretty woman. See
http://www.youtube.com/watch?v=-0rtreSoKjw&feature=channel_page
I was afraid to run yesterday as I thought I was in a weakened condition but I did go for a long walk. Much easier than a few weeks ago. While I was out there, a woman from my LiveStrong program pulled up beside me. I had assumed she lived far away as she had taught in a school district 20 miles from here but no, she lives a few miles away and is in a carpool with my neighbor. She has almost 2 inches of hair despite being out of chemo 6 weeks. However she has lost a good deal of her hearing due to Cytoxan. I keep thinking that it was really due to Adriamycin-a first cousin of streptomycin-a known ototoxin. I had a job a very long time ago at the Kresge Hearing Research Inst documenting damage to hair cells ( inside the organ of Corti inside the cochlea) due to various antibiotics. Lots of them did-especially ones with mycin in their name.
Yesterday Steve and I went to the restaurant run by the culinary arts students at Washtenaw Community College for their buffet full of vegetables that I usually don't eat like a leek and fennel casserole, baby patty pans, marinated portobellos, and so on. A very good deal. Also they sell deluxe baked goods for way less and of much better quality than anywhere else. I bought this very good lemon sponge cake for Naomi's birthday which I decorated with green and gold sugar glitter. Very tasty.
Radiation is for 'local' control. Apparently they can never be sure that they got all of the cancerous cells out-there's often little satellites. Mets are a more dangerous problem so that's why chemo is usually first to deal with any cells that might have escaped the breast. Chemo doesn't do well inside the breast but radiation does. If I had had a mastectomy, I probably would not need radiation but some people have tumors close to the chest wall that still might have pieces despite removing the majority of the breast.
Apparently my cousin's child Nadine has a role in the remake of Beverly Hills 90201 (forgot exact zip code) Very pretty woman. See
http://www.youtube.com/watch?v=-0rtreSoKjw&feature=channel_page
I was afraid to run yesterday as I thought I was in a weakened condition but I did go for a long walk. Much easier than a few weeks ago. While I was out there, a woman from my LiveStrong program pulled up beside me. I had assumed she lived far away as she had taught in a school district 20 miles from here but no, she lives a few miles away and is in a carpool with my neighbor. She has almost 2 inches of hair despite being out of chemo 6 weeks. However she has lost a good deal of her hearing due to Cytoxan. I keep thinking that it was really due to Adriamycin-a first cousin of streptomycin-a known ototoxin. I had a job a very long time ago at the Kresge Hearing Research Inst documenting damage to hair cells ( inside the organ of Corti inside the cochlea) due to various antibiotics. Lots of them did-especially ones with mycin in their name.
Yesterday Steve and I went to the restaurant run by the culinary arts students at Washtenaw Community College for their buffet full of vegetables that I usually don't eat like a leek and fennel casserole, baby patty pans, marinated portobellos, and so on. A very good deal. Also they sell deluxe baked goods for way less and of much better quality than anywhere else. I bought this very good lemon sponge cake for Naomi's birthday which I decorated with green and gold sugar glitter. Very tasty.
Wednesday, April 1, 2009
Radiation buddies
Radiation is usually scheduled at the same time everyday so you probably will share the waiting room with the same people and get to know them. Pickings are slim for the 9:25 slot however. A much older woman on oxygen and probably an inpatient and a younger man. He might be all right: he at least smiled. But then the lady I liked so much from my last support group walked by who has a slightly earlier spot-good! a friend!
Last night I was thinking that radiation might not be the walk in the park I hoped it would be. I was very sore and felt ill and more tired than I ever had been on chemo. Maybe I'm coming down with something as it would be too fast to have systemic effects. I was second guessing myself about the wisdom of choosing the 3 week study as the soreness may be due to that and I can't complain to the onc as she would just say "I told you not to do this." Also I was wearing deodorant yesterday, a big no-no as the metallic salts can wreak havoc causing hot spots, etc. I wasn't told in advance about this although I had read about that at some point. The rad onc suggested wearing cornstarch, which would do squat against my usually powerful apocrine glands. Fortunately Taxol seems to have killed them off (along with my oil glands) but if they come back before I'm done, it will be just another indignity among many that I'll have to put up with.
At the memorial the other day, a woman came up to me who had heard about my BC said Well at least you didn't lose your hair.
While we were returning to the car last night and I was carrying the leftover boxes so the birthday princess could walk with free hands (she so loves to have a sherpa), a strong wind suddenly threatened to make me bald. Please hold these boxes-my wig is about to fly off!!!
Naomi found this hilarious.
Dinner with Naomi was fine as she had gotten over her disappointment about not getting the driver's license yesterday. She talked about her future with the boyfriend. She is so naive but very hopeful about her future.
My running program might have to be put on hold due to breast soreness and I think I might be coming down with some throat infection. At least I am not as tired as yesterday. I will see how I feel in a few hours.
Last night I was thinking that radiation might not be the walk in the park I hoped it would be. I was very sore and felt ill and more tired than I ever had been on chemo. Maybe I'm coming down with something as it would be too fast to have systemic effects. I was second guessing myself about the wisdom of choosing the 3 week study as the soreness may be due to that and I can't complain to the onc as she would just say "I told you not to do this." Also I was wearing deodorant yesterday, a big no-no as the metallic salts can wreak havoc causing hot spots, etc. I wasn't told in advance about this although I had read about that at some point. The rad onc suggested wearing cornstarch, which would do squat against my usually powerful apocrine glands. Fortunately Taxol seems to have killed them off (along with my oil glands) but if they come back before I'm done, it will be just another indignity among many that I'll have to put up with.
At the memorial the other day, a woman came up to me who had heard about my BC said Well at least you didn't lose your hair.
While we were returning to the car last night and I was carrying the leftover boxes so the birthday princess could walk with free hands (she so loves to have a sherpa), a strong wind suddenly threatened to make me bald. Please hold these boxes-my wig is about to fly off!!!
Naomi found this hilarious.
Dinner with Naomi was fine as she had gotten over her disappointment about not getting the driver's license yesterday. She talked about her future with the boyfriend. She is so naive but very hopeful about her future.
My running program might have to be put on hold due to breast soreness and I think I might be coming down with some throat infection. At least I am not as tired as yesterday. I will see how I feel in a few hours.
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