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.
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