I am tired of cancer, tired of chemo, tired of being cooped up so long. The days go by so so slowly and the nights are worse. Many of my friends have gone off to warmer places, which of course I don't blame them. I feel very isolated.
I am no longer on vicodin as it causes side effects on its own. Fortunately most of the muscle aches have gone away. I am starting to get neuropathy-tingling and numbness of the feet. I was able to take a 2 mile walk-very chilly against the wind-that helped me feel a little better.
Saturday, January 31, 2009
Friday, January 30, 2009
Taxol hell!
Naomi and the 'Big Girl' in foreground-Naomi in blackI guess I got off lightly with the AC arm of my treatment. Yes I had burning mucus membranes, burning skin and scalp, hair loss and lots of queasiness but it was somewhat tolerable. Most people suffer much worse. But I am finding Taxol intolerable. I was warned that I might have muscle aches similar to that from the flu by the 3rd day but the pain should be treatable with NSAIDs. By late yesterday afternoon, I could not do anything to make myself comfortable. My muscles, particularly in my thighs, were unbelievably painful. Any pressure on them results in more pain. I kept tossing and turning last night trying to find a position that I wouldn't be in pain. Ibuprofen did nothing. I had Steve leave the room as I knew all my tossing and moaning would keep him up. Finally I took vicodin, which has knocked down the pain to something I can tolerate. I don't understand the mechanism of the pain. Nerve damage? Over the years I've had lots of temporary muscle pain due to overuse injuries from marathons, triathlons, etc but nothing that ever approached the pain I had yesterday. Even dealing with the broken arm felt better as it would not hurt if I could keep it still and supported.
Hopefully this will be as bad as it gets and the vicodin is working. I can always take more and knock myself out. With the arm, I was on Percocet for 2 weeks, which felt way stronger than vicodin. By the 2nd week I was just taking half-tablets. I barely feel my bad vein and the clot has stopped migrating.
I tried to get reimbursed for my wig purchase yesterday. In 2007, we had MCare, a local HMO based on using UM services. That dissolved and our employer gave us Blue Cross instead but not Blue Cross of Michigan, Blue Cross of New Jersey!!! For the most part, they have covered almost everything with no deductables until yesterday. Did you use an in-service provider for the wig? Noone told me I had to. I was told that a wig would be covered-not that I had to get it from a special provider. Finally they told me that they will cover the wig if there is no provider within 50 miles of me. Then they told me that there is a provider in Toledo. I said that there is no way that I could get to Toledo in less than 60 miles unless I was a bird flying a straight line. No in-service providers at all in Michigan!
Through the slippery slush and rush hour traffic, we went to Birmingham to watch the Rats lose against the team ranked first in the state. I will post later a video of Naomi trying to guard their center who is 6'6". Naomi looked very tiny next to her even though she is 5'10". I couldn't think of anything yesterday that I would enjoy eating but we then drove by the Star Deli in Southfield. Mushroom barley soup-perfect! That was dinner and breakfast.
Josh thought he would be so happy by the relief of keeping his job but seeing grown men cry as they were told one by one over the last 2 days that they have no job has been very hard on him. Such despair.
Hopefully this will be as bad as it gets and the vicodin is working. I can always take more and knock myself out. With the arm, I was on Percocet for 2 weeks, which felt way stronger than vicodin. By the 2nd week I was just taking half-tablets. I barely feel my bad vein and the clot has stopped migrating.
I tried to get reimbursed for my wig purchase yesterday. In 2007, we had MCare, a local HMO based on using UM services. That dissolved and our employer gave us Blue Cross instead but not Blue Cross of Michigan, Blue Cross of New Jersey!!! For the most part, they have covered almost everything with no deductables until yesterday. Did you use an in-service provider for the wig? Noone told me I had to. I was told that a wig would be covered-not that I had to get it from a special provider. Finally they told me that they will cover the wig if there is no provider within 50 miles of me. Then they told me that there is a provider in Toledo. I said that there is no way that I could get to Toledo in less than 60 miles unless I was a bird flying a straight line. No in-service providers at all in Michigan!
Through the slippery slush and rush hour traffic, we went to Birmingham to watch the Rats lose against the team ranked first in the state. I will post later a video of Naomi trying to guard their center who is 6'6". Naomi looked very tiny next to her even though she is 5'10". I couldn't think of anything yesterday that I would enjoy eating but we then drove by the Star Deli in Southfield. Mushroom barley soup-perfect! That was dinner and breakfast.
Josh thought he would be so happy by the relief of keeping his job but seeing grown men cry as they were told one by one over the last 2 days that they have no job has been very hard on him. Such despair.
Thursday, January 29, 2009
Superficial
Even though I thought I was done with the Red Devil, it still has its evil hold on me. It has slowly destroyed my vein that I got the last infusion in 16 days ago and a clot has developed that has slowly moved up my arm. The clot is now 3 inches from my wrist bone and is painful. As it is in a superficial vein, it isn't supposed to be dangerous. My queasiness hasn't completely gone away either though most of yesterday, I felt just fine but today-queasy. I awoke this morning after a very fitful sleep to muscle aches. I took Motrin for them and to hopefully deal with the clot so they aren't bothering me so much at the moment. I will check in with my onc to see if this clot thing needs to be dealt with. I've been lucky never to have any vein issues-no varicose veins anywhere but now this.
Yesterday Deb and I went to see "Slumdog Millionaire" a great movie with amazing scenes though some of them not appropriate for the queasy.
Today, more calls to doctors' offices, insurance plans, etc and another away game for Naomi in Birmingham.
Yesterday Deb and I went to see "Slumdog Millionaire" a great movie with amazing scenes though some of them not appropriate for the queasy.
Today, more calls to doctors' offices, insurance plans, etc and another away game for Naomi in Birmingham.
Wednesday, January 28, 2009
Picking ones poison redux
In 11th grade, I had an English teacher who had a long list of rules. Any written violation would result in ones grade being lower. She didn't want to see the word 'get' used in any form and unless we were harvesting crops or removing nits from someone's hair, she did not want to see the word 'pick' used either when we meant select or opt. She had many other such rules too, but Ms. U is not grading this.
One of the many side effects of AC is eye irritation. For the past week or so, my eyes have been constantly running. I awake to dried tears sticking my eyes together and my eyelashes clumped together. I have to soak my eyelashes carefully to redissolve the tears. Don't want to rip my precious eyelashes out as who knows when they will be replaced. My eyes are not infected according to Dr. Henry. As she peered into my eyes, I peered into hers and noticed she had some funky eye problem herself. Bad contact day? Yes, and cats.
To prevent potential allergic reactions to Taxol, I needed a double dose of antihistamines whose side-effect would be dry eyes so I had a 24 hour break from the constant tearing. Tears are starting to form again so I guess I could take more Zyrtec but then risk a bellyache. On the whole, I feel much better than I did after being dosed with AC. All those anti-emetics needed had side effects but did prevent me from severe nausea. My Neulasta finally came to me about 5 pm which Steve needs to inject later today into my belly, unnerving for both of us. I have some vein damage from my last AC dose. The vein is turning dark and painful so it needs to be watched.
Although I was exhausted from no sleep the night before, I did go to another of Naomi's road games at Lincoln. Many years ago I had taught Adult Ed GED Math in its district at night and physics and chemistry for the high achieving and high ability students at Huron during the day. What a contrast! I had only one student whose math achievement even approached Naomi's when she was in 7th grade. I worked with him separately and he was able to score in the high 90s on the GED at the level of the average Ann Arbor 8th grade. I physically taught in a 8th grade math class where they charted all the students' progress at learning their time tables on the wall. Only one child had mastered it. In Ann Arbor, this would have been achieved way earlier by most. The rest of my GED students were at elementary school level. Since then, fairly nice subdivisions have popped up in its district along with its trailer parks that dominated 33 years ago when I was around so their schools have slowly improved. One of the moms' daughter is currently teaching history there and is appalled how ill-equipped the students in general are. To save money recently, they dialed the heat down in the gym during our big freeze 10 days ago resulting in pipes bursting and the good gym's floor buckling from water damage so we had to play in their back-up gym. Their team's star player, Crystal, is a good friend of Naomi's from their days together of AAU bball. I am good friends with Crystal's parents so it was nice to see them all last night. Crystal's dad was usually the asst coach of the AAU team and was very encouraging to Naomi. Due to Crystal's stellar play, Lincoln was actually ahead during the first quarter but it is hard to sustain that effort for long all by oneself and Huron quickly caught up and won by almost 40 pts just with the bench after a while.
News flash while I type: Josh is safe at work along with his 2 fellow 'young hotshots' as his older colleagues have identified them or in Pford's assessment; critical talent. Everyone else young is gone. Yes I know how to spell but I am trying to subvert search engines. Recently I was very alarmed to find a cookie from my former employer's corporate headquarters (where I know noone) in my Statcounter. I guess if they were really spying on me, the cookie would be blocked so I would never see them but it made me nervous nonetheless. My separation agreement included never disparaging them. When we were all let go, news reporters would stick microphones in our face wondering how we felt and everyone answered no comment. As for my former employer, they are trying to buy another big company right now which I hope will improve our personal portfolio in the long run. In the short run, they are cutting our dividend which had allowed us to accumulate alot of shares at bargain prices but if the price per share rises, our huge gamble will work out. If not....oh well.
But Josh having a job is a huge relief. Maybe he and Julia will start that family soon. Hope, hope, hope.... Also yesterday I got a notice from Huron that Naomi received an "H" in that art class I was trying to get her out of. WTF! But it actually is good news, it meant that the grade won't be used against her as I later found out. My protest seemed to have worked. She didn't need the credit anyway.
More snow today but I noticed them clearing the bike path behind my house so I could theoretically walk. Still have insurance issues to clear up.
One of the many side effects of AC is eye irritation. For the past week or so, my eyes have been constantly running. I awake to dried tears sticking my eyes together and my eyelashes clumped together. I have to soak my eyelashes carefully to redissolve the tears. Don't want to rip my precious eyelashes out as who knows when they will be replaced. My eyes are not infected according to Dr. Henry. As she peered into my eyes, I peered into hers and noticed she had some funky eye problem herself. Bad contact day? Yes, and cats.
To prevent potential allergic reactions to Taxol, I needed a double dose of antihistamines whose side-effect would be dry eyes so I had a 24 hour break from the constant tearing. Tears are starting to form again so I guess I could take more Zyrtec but then risk a bellyache. On the whole, I feel much better than I did after being dosed with AC. All those anti-emetics needed had side effects but did prevent me from severe nausea. My Neulasta finally came to me about 5 pm which Steve needs to inject later today into my belly, unnerving for both of us. I have some vein damage from my last AC dose. The vein is turning dark and painful so it needs to be watched.
Although I was exhausted from no sleep the night before, I did go to another of Naomi's road games at Lincoln. Many years ago I had taught Adult Ed GED Math in its district at night and physics and chemistry for the high achieving and high ability students at Huron during the day. What a contrast! I had only one student whose math achievement even approached Naomi's when she was in 7th grade. I worked with him separately and he was able to score in the high 90s on the GED at the level of the average Ann Arbor 8th grade. I physically taught in a 8th grade math class where they charted all the students' progress at learning their time tables on the wall. Only one child had mastered it. In Ann Arbor, this would have been achieved way earlier by most. The rest of my GED students were at elementary school level. Since then, fairly nice subdivisions have popped up in its district along with its trailer parks that dominated 33 years ago when I was around so their schools have slowly improved. One of the moms' daughter is currently teaching history there and is appalled how ill-equipped the students in general are. To save money recently, they dialed the heat down in the gym during our big freeze 10 days ago resulting in pipes bursting and the good gym's floor buckling from water damage so we had to play in their back-up gym. Their team's star player, Crystal, is a good friend of Naomi's from their days together of AAU bball. I am good friends with Crystal's parents so it was nice to see them all last night. Crystal's dad was usually the asst coach of the AAU team and was very encouraging to Naomi. Due to Crystal's stellar play, Lincoln was actually ahead during the first quarter but it is hard to sustain that effort for long all by oneself and Huron quickly caught up and won by almost 40 pts just with the bench after a while.
News flash while I type: Josh is safe at work along with his 2 fellow 'young hotshots' as his older colleagues have identified them or in Pford's assessment; critical talent. Everyone else young is gone. Yes I know how to spell but I am trying to subvert search engines. Recently I was very alarmed to find a cookie from my former employer's corporate headquarters (where I know noone) in my Statcounter. I guess if they were really spying on me, the cookie would be blocked so I would never see them but it made me nervous nonetheless. My separation agreement included never disparaging them. When we were all let go, news reporters would stick microphones in our face wondering how we felt and everyone answered no comment. As for my former employer, they are trying to buy another big company right now which I hope will improve our personal portfolio in the long run. In the short run, they are cutting our dividend which had allowed us to accumulate alot of shares at bargain prices but if the price per share rises, our huge gamble will work out. If not....oh well.
But Josh having a job is a huge relief. Maybe he and Julia will start that family soon. Hope, hope, hope.... Also yesterday I got a notice from Huron that Naomi received an "H" in that art class I was trying to get her out of. WTF! But it actually is good news, it meant that the grade won't be used against her as I later found out. My protest seemed to have worked. She didn't need the credit anyway.
More snow today but I noticed them clearing the bike path behind my house so I could theoretically walk. Still have insurance issues to clear up.
Tuesday, January 27, 2009
Taxol
So the second half begins. One of the chief concerns about Taxol that it and its medium-cremaphor (derived from castor oil) is that it can cause allergic reactions in many people. I was to pre-treat myself with Zyrtec and Zantac 6 hours before the infusion (4 am) but as of 10:30 pm last night, the exact instructions were missing. Right before the infusion, they give steroids too. Some places give steroids up to two days in advance but fortunately, Dr. Henry doesn't. Good, I hate steroids. Anyrate, I didn't take both drugs like I was supposed to at the right times so they had to make adjustments. My blood counts were OK but the red blood count keeps getting lower and lower. She thinks it will stabilize for the next 2 weeks and slowly get better. So the main miseries are bone pain 3 days out that NSAIDS will eliminate and burning, painful fingers and toes that nothing will help in the short term. No nausea allegedly, but guess what, my main symptom right now is: queasiness. I think it is from the Zyrtec. The allergic reactions usually happen during the first hour of infusion (of 3 hours-they can't do it any faster) so I dodged that bullet.
It took a long time to get started. My official time was 9:30 am. I had to be at the hospital at 7:30 for blood work and then see the oncologist. My new crappy insurance demands referral forms for everything and my primary care physician was supposed to do this last week (along with sending one to the radiologist and the dermatologist). I had given the person in charge a list of dates and fax numbers and she was to call if she had any problems. Apparently she just threw everything away and made no notation of this. Still working on this. Also Neulasta isn't covered under Aetna's drug plan so their $10 co-pay doesn't apply. They consider it a medical procedure so I have to pay $630/dose (10% of $6300). Now Rite-Aid sells it for $3800/dose and I know they are making a big profit but I have to buy it from Aetna at their even higher inflated price.I need it tomorrow but they were to deliver it today. Still no sign of it.
Two babies under one awaiting chemo today. One looked the picture of health but the other, yellow and on oxygen. A bed over from me, was the nice lady from my support group my age who needs Herceptin. I didn't recognize her without her wig. Next to me was a demanding lymphoma patient who quickly moved our shared TV to his side without asking me even though I was there first. My nurse would be trying to treat me and he had a whole list of demands that he insisted that she comply with distracting her from me.Plus he kept leaving our shared john's toilet seat up. It took 5 needle sticks to find a suitable vein but the infusion was event free and long. No nasty tastes in my my mouth. I just read "The Life of Pi" and dosed off.
Another road game tonight. The Lady Rats finally lost by one basket to the Kicking Mules last night. I am not making these names up. Coach Steve surprisingly didn't go crazy-he really wants to win everything. The girls were upset and captain Tyler was crying. They triple teamed her most of the game. True, the other girls could score and did but she was very frustrated. At one point the other team knocked her down and then sat on her so she couldn't leave the key on time and was called for a 3 second violation. The Bedford fans were screaming "Over-rated" everytime she had the ball. I think it was the most hostile fan enviroment the girls ever experienced and most of the girls were too rattled to make their free throws. Naomi did, however. She can tune all the screaming out.
I am so tired. I really didn't feel like I could sleep until 5 am and then I had to get up.
It took a long time to get started. My official time was 9:30 am. I had to be at the hospital at 7:30 for blood work and then see the oncologist. My new crappy insurance demands referral forms for everything and my primary care physician was supposed to do this last week (along with sending one to the radiologist and the dermatologist). I had given the person in charge a list of dates and fax numbers and she was to call if she had any problems. Apparently she just threw everything away and made no notation of this. Still working on this. Also Neulasta isn't covered under Aetna's drug plan so their $10 co-pay doesn't apply. They consider it a medical procedure so I have to pay $630/dose (10% of $6300). Now Rite-Aid sells it for $3800/dose and I know they are making a big profit but I have to buy it from Aetna at their even higher inflated price.I need it tomorrow but they were to deliver it today. Still no sign of it.
Two babies under one awaiting chemo today. One looked the picture of health but the other, yellow and on oxygen. A bed over from me, was the nice lady from my support group my age who needs Herceptin. I didn't recognize her without her wig. Next to me was a demanding lymphoma patient who quickly moved our shared TV to his side without asking me even though I was there first. My nurse would be trying to treat me and he had a whole list of demands that he insisted that she comply with distracting her from me.Plus he kept leaving our shared john's toilet seat up. It took 5 needle sticks to find a suitable vein but the infusion was event free and long. No nasty tastes in my my mouth. I just read "The Life of Pi" and dosed off.
Another road game tonight. The Lady Rats finally lost by one basket to the Kicking Mules last night. I am not making these names up. Coach Steve surprisingly didn't go crazy-he really wants to win everything. The girls were upset and captain Tyler was crying. They triple teamed her most of the game. True, the other girls could score and did but she was very frustrated. At one point the other team knocked her down and then sat on her so she couldn't leave the key on time and was called for a 3 second violation. The Bedford fans were screaming "Over-rated" everytime she had the ball. I think it was the most hostile fan enviroment the girls ever experienced and most of the girls were too rattled to make their free throws. Naomi did, however. She can tune all the screaming out.
I am so tired. I really didn't feel like I could sleep until 5 am and then I had to get up.
Monday, January 26, 2009
Birthday boys
Steve and Oliver together last month
Steve as an infant
Oliver on Jan 26, 2008
Today is both Oliver and Steve's birthdays. It seems like yesterday that Shanna called very early in the morning thinking she was in labor 2 weeks early. Fortunately the car was all loaded with baby furniture. I sent out Steve to get gas and money, hastily packed and loaded up addresses in the Tom-Tom and was out the door within 30 minutes. To keep myself awake, I played my sing-along Italian CDs hoping something will stick. I tried to keep my stops to a minimum-thwarted by NY State's disabling of the autofill feature of their gas pumps making it uncomfortable to touch 0 degree metal with no gloves. My left arm still hadn't completely recovered so dealing with tolls was very painful as I could barely extend my left arm. I had a bag full of quarters and a bag full of Canadian money on the seat next to me. I had made the 755 mile trip in 12 hours flat, good considering I had to go through customs twice and go through Detroit during rush hour. Shanna still wasn't quite sure she was in labor when I got there. Her 6th floor apartment faces south so we could view the Boston skyline. That night they had fireworks. At midnight, we made the trip to Mt. Auburn in Cambridge circling the hospital several times trying to figure out how to enter despite the many No Left Turn signs saying we couldn't. She was 5 cm at check in. She fairly quickly progressed to 8 cm dealing with the contractions very well but the last hour to 10 cm was very rough. As the midwife was checking her right before she planned to push, she said she didn't know exactly what she was feeling but she did know it wasn't the top of a head. Baby Oliver was soon found to be in a pike position-feet up next to his ears. A C-section was arranged over the next hellish hour. I could watch only through a series of windowed doors but at 5:30 am, beautiful Oliver was yanked out screaming, pink, and perfect.
Aside from Steve and Oliver entering their next years, I am beginning the 2nd half of chemo and Naomi begins her new semester. I can only hope it will be better for all of us.
Ran more yesterday despite the cold and it was not any easier.
Sunday, January 25, 2009
Cancer platitudes
· “You could step off the curb tomorrow and get hit by a bus” (not a good analogy, its like I already got hit by the bus and now its backing up over me)
· “You gotta think positively” (ok, I’m positive I had cancer, and I’m positive it wasn’t fun)
· “You’ll be fine”
· “So, you’re fine now right?”
· “My grandmom died of that”
· “nice fro”
· “God gives you what you can handle”
· “What’s your prognosis”
· “Can I see what is going on under that hat?”
· “If anyone can beat it it’s you”
· “If it’s not your time, it’s not your time” (then why bother with the surgery and treatment?)
· “Life is not fair” (thanks for the heads up)
· “Every cloud has a silver lining”
· “Its just a bump in the road” (living with a cancer diagnoses, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road its a major mountain.)
· “Don’t worry”
· “Your lucky you didn’t lose weight on chemo”
· ‘Remember Lance”
· “You gotta be like Lance”
· “Lance beat cancer”
· “Just look at Lance”
· “Just think, you’re done” (done? I’m done?…I guess I’m done with cancer everyone. Nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence)
· “You look good bald”
· “So, was the cancer bad?” (no, I had the good kind)
· “This is a treatable disease”
· “You have a nice shaped head”
· “How do you know if it’s working?” (I die, if it didn’t work)
· “You know you can eat more curry, its supposed to kill cancer cells” (great tip, thanks)
· “You’ll be fine, you have a great attitude” (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? right now my attitude about cancer is lousy. what does that mean?)
· “If you really want to live, you will. Just never give up. when people give up, they die”
· “Don’t worry, your hair will grow back”
The above is a collection I gleaned from cyberspace (http://ruralwomen.wordpress.com/) from this woman living 2.5 hours from any treatment center in Colorado. She has survived TNBC and now is on a mission to educate patients isolated by geography and lack of family. The internet is their lifeline.
Yesterday was a lazy day. Too cold for me to go out and exercise. I still have periods of queasiness but still they seem to be diminishing. Taxol rarely causes nausea but apparently does a number on one's taste buds according to my breast cancer blogging sisters on it. I did eat some chocolate the other day and enjoyed it. Moms take turns bringing dinner to the girls for away games. I was holding this homemade brownie/cupcake for Naomi and tasted it and ended up gobbling it down. Naomi used my cancer card to get another for herself. Three away games next week. Hopefully I can see them if I don't react badly to taxol Tuesday. Naomi went to a EMU game with the team to sell raffle tickets. She rarely has a day off. Even if they aren't practicing, they are all together and Coach Steve sends a constant barage of text messages when they aren't together. Josh came over and brought us lunch.
Last night we finally had our mom's group as we had a rare break from snowstorms. Our group of 5 moms got together more than 29 years ago with our little babies that were born the summer and fall of 1979. Collectively we have 10 children and 4 grandchildren. It has been fun watching these little seal babies morph into adults. At our first meeting, all the babies could do was lie on their bellies and lift their wobbly, bald heads to take in each other. I usually make the dessert but I had no energy and sent Steve out to buy one. We also drink alot but I can't do that. Next month, three of them are off to Kenya, Jaimaca, and a Caribbean cruise. I will be in cold, lonely chemoland. Jo had cleaned out her bookshelves so now we all have plenty of reading material. I need to plot my own escape from my current situation. It is such a struggle for me not to throw pity parties one right after another.
· “You gotta think positively” (ok, I’m positive I had cancer, and I’m positive it wasn’t fun)
· “You’ll be fine”
· “So, you’re fine now right?”
· “My grandmom died of that”
· “nice fro”
· “God gives you what you can handle”
· “What’s your prognosis”
· “Can I see what is going on under that hat?”
· “If anyone can beat it it’s you”
· “If it’s not your time, it’s not your time” (then why bother with the surgery and treatment?)
· “Life is not fair” (thanks for the heads up)
· “Every cloud has a silver lining”
· “Its just a bump in the road” (living with a cancer diagnoses, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road its a major mountain.)
· “Don’t worry”
· “Your lucky you didn’t lose weight on chemo”
· ‘Remember Lance”
· “You gotta be like Lance”
· “Lance beat cancer”
· “Just look at Lance”
· “Just think, you’re done” (done? I’m done?…I guess I’m done with cancer everyone. Nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence)
· “You look good bald”
· “So, was the cancer bad?” (no, I had the good kind)
· “This is a treatable disease”
· “You have a nice shaped head”
· “How do you know if it’s working?” (I die, if it didn’t work)
· “You know you can eat more curry, its supposed to kill cancer cells” (great tip, thanks)
· “You’ll be fine, you have a great attitude” (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? right now my attitude about cancer is lousy. what does that mean?)
· “If you really want to live, you will. Just never give up. when people give up, they die”
· “Don’t worry, your hair will grow back”
The above is a collection I gleaned from cyberspace (http://ruralwomen.wordpress.com/) from this woman living 2.5 hours from any treatment center in Colorado. She has survived TNBC and now is on a mission to educate patients isolated by geography and lack of family. The internet is their lifeline.
Yesterday was a lazy day. Too cold for me to go out and exercise. I still have periods of queasiness but still they seem to be diminishing. Taxol rarely causes nausea but apparently does a number on one's taste buds according to my breast cancer blogging sisters on it. I did eat some chocolate the other day and enjoyed it. Moms take turns bringing dinner to the girls for away games. I was holding this homemade brownie/cupcake for Naomi and tasted it and ended up gobbling it down. Naomi used my cancer card to get another for herself. Three away games next week. Hopefully I can see them if I don't react badly to taxol Tuesday. Naomi went to a EMU game with the team to sell raffle tickets. She rarely has a day off. Even if they aren't practicing, they are all together and Coach Steve sends a constant barage of text messages when they aren't together. Josh came over and brought us lunch.
Last night we finally had our mom's group as we had a rare break from snowstorms. Our group of 5 moms got together more than 29 years ago with our little babies that were born the summer and fall of 1979. Collectively we have 10 children and 4 grandchildren. It has been fun watching these little seal babies morph into adults. At our first meeting, all the babies could do was lie on their bellies and lift their wobbly, bald heads to take in each other. I usually make the dessert but I had no energy and sent Steve out to buy one. We also drink alot but I can't do that. Next month, three of them are off to Kenya, Jaimaca, and a Caribbean cruise. I will be in cold, lonely chemoland. Jo had cleaned out her bookshelves so now we all have plenty of reading material. I need to plot my own escape from my current situation. It is such a struggle for me not to throw pity parties one right after another.
Saturday, January 24, 2009
My spots, my spots, my lovely pre-cancer spots..check them out
Naomi in today's newspaper. She hates the picture as her tongue is hanging out.I had my dermatology consult yesterday for my black spot. The nurse reviewing my case goes..so you're here complaining of alopecia. Well I have alopecia and it breaks my heart but that's not why I am here. So the good news is that the black spot looks benign to the several experts who examined it but then they found several pre-cancerous lesions on my face that they said had to go. The black spot was shaved off and sent to the lab even though they believe it to be harmless and they froze off 4 suspicious spots on my face with liquid nitrogen. These will scab over in a few days adding to my appeal, along with my pale, papery skin, black circles under the eyes, baldness, deformed boob, apocrine glands that have run amok, baldness, flabbiness, watery red eyes, etc.
But good news on the whole. Also good is that Josh might be safe which might indirectly result in another grandchild for me. It is so sad that so many responsible people might forgo having a family for economic reasons. It finally was slightly above freezing, which I don't think it has been above 28 in more than a month so I ran just a bit further than the day before. Not far and it was still hard. Then we sped off to Chelsea. The game was fun to watch. Offensively Naomi did not do well but she stole the ball several times and was very good defensively.
I have such bizarre dreams. I dreamt I had to go to a wedding but I had put everything off until 30 minutes before it was to start so I was running around like a madwoman against the clock trying to find something to wear. Meanwhile Steve insisted on wearing a brilliant turquoise dress-yes dress-that I was trying to dissuade him from wearing but his sister kept telling him how good he looked in it undermining me. Naomi had spray painted her hair blue to give me more agita.
I met Deb for Happy Hour and had the panko fried artichokes-very tasty! She hadn't had them before
But good news on the whole. Also good is that Josh might be safe which might indirectly result in another grandchild for me. It is so sad that so many responsible people might forgo having a family for economic reasons. It finally was slightly above freezing, which I don't think it has been above 28 in more than a month so I ran just a bit further than the day before. Not far and it was still hard. Then we sped off to Chelsea. The game was fun to watch. Offensively Naomi did not do well but she stole the ball several times and was very good defensively.
I have such bizarre dreams. I dreamt I had to go to a wedding but I had put everything off until 30 minutes before it was to start so I was running around like a madwoman against the clock trying to find something to wear. Meanwhile Steve insisted on wearing a brilliant turquoise dress-yes dress-that I was trying to dissuade him from wearing but his sister kept telling him how good he looked in it undermining me. Naomi had spray painted her hair blue to give me more agita.
I met Deb for Happy Hour and had the panko fried artichokes-very tasty! She hadn't had them before
Friday, January 23, 2009
Doubling of tumors
The other day when the rad onc was reviewing the facts of my case with me, I asked if it were possible for my tumor to have doubled in less than a month (and that's just the linear component-the volume of the tumor increased 8-fold). She said that was impossible though usually the ultrasound and the measurement of the tumor by the pathologist match very closely except in lobular cancer, which I don't have. However the literature does not support her assertion.
May 8, 2008 Reuters Health Article says:
LONDON (Reuters) - Five percent of breast cancer tumors appear to double in size in just over a month, Norwegian researchers said on Thursday in a study underscoring the potential benefits of more frequent screening.
The study published in the journal Breast Cancer Research also suggested detection rates of just 26 percent for a 5 mm tumor, and 91 percent for a 10 mm tumor.
The researchers used a computer model fed with national screening and cancer data to calculate how quickly tumors grow and estimate the proportion of breast cancers detected at screening.
This data on nearly 400,000 women aged 50 to 69 helped them estimate that about 5 percent of tumors may double in just over a month, growing from 10 mm to 20 mm. This was mainly among younger women in the study’s age group.
Another 5 percent of tumors took more than six years to grow to the same size, according to the data collected before and after Norway began national breast cancer screening in 1995. This was mostly among older woman in the study.
Well 5% do apparently and I bet they are all triple negative (~15% of tumors are triple negative).
I guess I am 'lucky' I went in for the screening when I did. A few months earlier it would have been too small to detect: a few months later and it would be in my nodes. It had already invaded my lymphatic system within the breast.
And my black spot. I hope that I don't find out today that I was 'lucky' to get breast cancer because otherwise I would not have lost my hair and noticed this spot. So the spot is uniform in color, no redness or ulceration. These are characteristics of something benign. But it is so black even though it has never seen the sun and irregular shaped. I am out in the sun more than I should be but nothing on my body is darker than a pale freckle. I have very few moles.
So I tried to run yesterday as the sun had melted a path. Toasty at 26 deg. It was very, very hard. With several stops, I managed to go a little over a mile but I recovered quickly and felt alright afterwards.
Still battling insurance companies. Unbelievably frustrating and still not finished.
One of the moms came over last night to keep me company, always appreciated.
May 8, 2008 Reuters Health Article says:
LONDON (Reuters) - Five percent of breast cancer tumors appear to double in size in just over a month, Norwegian researchers said on Thursday in a study underscoring the potential benefits of more frequent screening.
The study published in the journal Breast Cancer Research also suggested detection rates of just 26 percent for a 5 mm tumor, and 91 percent for a 10 mm tumor.
The researchers used a computer model fed with national screening and cancer data to calculate how quickly tumors grow and estimate the proportion of breast cancers detected at screening.
This data on nearly 400,000 women aged 50 to 69 helped them estimate that about 5 percent of tumors may double in just over a month, growing from 10 mm to 20 mm. This was mainly among younger women in the study’s age group.
Another 5 percent of tumors took more than six years to grow to the same size, according to the data collected before and after Norway began national breast cancer screening in 1995. This was mostly among older woman in the study.
Well 5% do apparently and I bet they are all triple negative (~15% of tumors are triple negative).
I guess I am 'lucky' I went in for the screening when I did. A few months earlier it would have been too small to detect: a few months later and it would be in my nodes. It had already invaded my lymphatic system within the breast.
And my black spot. I hope that I don't find out today that I was 'lucky' to get breast cancer because otherwise I would not have lost my hair and noticed this spot. So the spot is uniform in color, no redness or ulceration. These are characteristics of something benign. But it is so black even though it has never seen the sun and irregular shaped. I am out in the sun more than I should be but nothing on my body is darker than a pale freckle. I have very few moles.
So I tried to run yesterday as the sun had melted a path. Toasty at 26 deg. It was very, very hard. With several stops, I managed to go a little over a mile but I recovered quickly and felt alright afterwards.
Still battling insurance companies. Unbelievably frustrating and still not finished.
One of the moms came over last night to keep me company, always appreciated.
Thursday, January 22, 2009
Chocolate
Generally I love chocolate: the richer the better. Belgian chocolate is the best! But now, it just grosses me out. I was loving it still in the early days of chemoland and had gotten plenty for X-mas but no more. I've lost my taste for rich sweet things in general. I had agreed to meet Anthony at a coffee house yesterday instead of going to Happy Hour (no drinking for me) but once there, I thought what could I have been thinking! At the Happy Hour place, I could have had yummy fried artichoke hearts, here at the coffee place-muffins. It isn't like I have lost my taste for everything bad for me-no- I crave macaroni and cheese, Philly cheesesteak, shrimp tempura presently. I did develop strange food aversions while pregnant, especially with Shanna but they were way different.
Who doesn't love chocolate! Steve and my mom and Josh. Steve will go into a gelato place and get vanilla, which I can't understand. I want to get every flavor! Maybe this is why he is so thin. His idea of a treat is to chew on pumpkin seeds. My mom had dropped out of high school, moved to downtown Detroit, and worked in a Sanders shop when she was 16. Her reasons were unclear on why she did this. She claimed to have been starving at home but her sister tells me that this was untrue. Sanders' primary products are all things chocolate, which my mom subsisted on for 2 years so I can understand that bumpy cakes and hot fudge puffs had no charm for her later in life. While I was growing up, she claimed to be allergic to chocolate and that's why she wouldn't touch it. She was vague when I asked what would happen if she ate some. She didn't seem allergic to anything else. One day when her Alzheimer's had just started to make it impossible for her to live outside of assisted living, I found her stuffing chocolate cookies into her mouth, one right after another. Her past self would not have had anything good to say about people who snarf their food down so quickly. I reminded her that she didn't like chocolate and that she was allergic to it. She looked puzzled and kept on eating them until I took them away. They didn't seem to get her sick. At that point, she was starving weighing only 90 lbs. She had been 5'6" and 140 lbs before Alzheimer's kicked in.
Still trying to straighten out my insurance. Such a pain! It was sunny and slightly warmer (20 deg!) so I increased my walk to an hour and then met Anthony. It was fun catching up.
Today is the last day of finals so Naomi and I spent almost 4 hours on the math last night. Fortunately she was in a receptive mood. Often when I work with her and she doesn't understand something, she blames me for not explaining it right and throws a tantrum. If I go back to basics, she accuses me of patronizing her. It's a no-win situation. It takes all my concentration to try to remain calm. Sometimes she works well with Josh but then he loses his patience with her. Shanna and Steve quickly throw in the towel. Since she is officially a special-ed student, she is entitled to help at any time by the school. For a while, she was in a higher tract of math. She found out quickly that the people they hire for tutoring knew less math than she did in 9th grade. She's in pre-calc now. As far as math abilities go, she actually scores quite high compared to the population in general so she is not mentally 'deficient' as one expert thought. She does get into trouble not double checking her work and misinterpreting story problems. Her math teacher now works with her. She probably is her highest ability student but Naomi seriously underperforms due to her reading issues. It is a challenge figuring out how best to help her. A few years ago, the head of the special ed was reviewing her case and test scores and wondered what was she doing there because in many areas, she scores quite high. I pointed out her one obvious deficiency-inability to process language-both written and spoken. To me, it was like saying how healthy a patient was except for the fact that their heart doesn't work. Or me, how healthy I was with my nice muscle tone, strong heart, etc-too bad I have cancer. Anyway, these 'experts' don't know what to do with her so it's up to me. We are making some progress fortunately. The fact that she now realizes that she is almost an adult and needs to have certain knowledge to make it is definite progress.
Queasiness is less and less present. Sometimes I don't feel it all. I am looking forward to when I don't feel it all all day.
Who doesn't love chocolate! Steve and my mom and Josh. Steve will go into a gelato place and get vanilla, which I can't understand. I want to get every flavor! Maybe this is why he is so thin. His idea of a treat is to chew on pumpkin seeds. My mom had dropped out of high school, moved to downtown Detroit, and worked in a Sanders shop when she was 16. Her reasons were unclear on why she did this. She claimed to have been starving at home but her sister tells me that this was untrue. Sanders' primary products are all things chocolate, which my mom subsisted on for 2 years so I can understand that bumpy cakes and hot fudge puffs had no charm for her later in life. While I was growing up, she claimed to be allergic to chocolate and that's why she wouldn't touch it. She was vague when I asked what would happen if she ate some. She didn't seem allergic to anything else. One day when her Alzheimer's had just started to make it impossible for her to live outside of assisted living, I found her stuffing chocolate cookies into her mouth, one right after another. Her past self would not have had anything good to say about people who snarf their food down so quickly. I reminded her that she didn't like chocolate and that she was allergic to it. She looked puzzled and kept on eating them until I took them away. They didn't seem to get her sick. At that point, she was starving weighing only 90 lbs. She had been 5'6" and 140 lbs before Alzheimer's kicked in.
Still trying to straighten out my insurance. Such a pain! It was sunny and slightly warmer (20 deg!) so I increased my walk to an hour and then met Anthony. It was fun catching up.
Today is the last day of finals so Naomi and I spent almost 4 hours on the math last night. Fortunately she was in a receptive mood. Often when I work with her and she doesn't understand something, she blames me for not explaining it right and throws a tantrum. If I go back to basics, she accuses me of patronizing her. It's a no-win situation. It takes all my concentration to try to remain calm. Sometimes she works well with Josh but then he loses his patience with her. Shanna and Steve quickly throw in the towel. Since she is officially a special-ed student, she is entitled to help at any time by the school. For a while, she was in a higher tract of math. She found out quickly that the people they hire for tutoring knew less math than she did in 9th grade. She's in pre-calc now. As far as math abilities go, she actually scores quite high compared to the population in general so she is not mentally 'deficient' as one expert thought. She does get into trouble not double checking her work and misinterpreting story problems. Her math teacher now works with her. She probably is her highest ability student but Naomi seriously underperforms due to her reading issues. It is a challenge figuring out how best to help her. A few years ago, the head of the special ed was reviewing her case and test scores and wondered what was she doing there because in many areas, she scores quite high. I pointed out her one obvious deficiency-inability to process language-both written and spoken. To me, it was like saying how healthy a patient was except for the fact that their heart doesn't work. Or me, how healthy I was with my nice muscle tone, strong heart, etc-too bad I have cancer. Anyway, these 'experts' don't know what to do with her so it's up to me. We are making some progress fortunately. The fact that she now realizes that she is almost an adult and needs to have certain knowledge to make it is definite progress.
Queasiness is less and less present. Sometimes I don't feel it all. I am looking forward to when I don't feel it all all day.
Wednesday, January 21, 2009
Violent boyfriends
Naomi's classmate Anna just died. Naomi said that they have known for a few days that she was 'brain-dead' but she was kept alive for organ harvasting. She leaves behind a twin brother and an older sister, a soccer star we've watched when Naomi was in the program, her parents and many, many grieving people. At school, in between their finals, they keep announcing the presence of grief cousellors. Again she is dead due to some violent jerky boyfriend who couldn't take 'No' for an answer so he bashed her head in with a hammer and left her to die in a snowbank.
And he isn't the only evil one. A seventeen year old girl recently broke her 17 year old boyfriend's weed bong. In retaliation, he smashed her lip, bit her hand and bashed her pet bunny to death with a baseball bat. The kids don't know the identity of this unhappy couple. It is not clear how these events affect Naomi-she really was sad about the bunny but matter-of-factly reports everyone else's reactions.
In cyberspace, there is this sweet, young woman in Seattle battling TNBC. (http://heathersjourneytohealth.blogspot.com/)This awful monster popped up even before she was ready to start a family so on top of dealing with the diagnosis of TNBC itself, she had to quickly make decisions about whether having a family were in the cards for her. So unfair! She had a similar chemo to mine and actually had finally finished but has had every nasty side effect that chemo has to offer-numerous infections, fingernails falling off, and the worse, fluid filling up her lungs and the area around the heart. She had to be hospitalized for the latter and they had alot of trouble controlling it. She had to accept that that there was a strong possibility she was going to die and wrote this heart-breaking farewell. But finally she is on the mend and will be released soon.
Even though the temp topped out at 18 yesterday, I was able to take a long walk as they cleared more of the bike path near me. Still queasy but less and less. Nausea is not a side effect of Taxol, which I start next Tuesday so this pukiness should be a thing of the past. Hope, hope, hope. Taxol has its own list of side effects but in general, it is much more tolerable than the AC. My hair might even start growing back.
The other night, Josh brought me "Burn After Reading". Very funny. And the Conchords are back! A really funny show about this 2 man New Zealand band trying to make it in New York. The character Jemaine reminds me so much of my former boss and friend Steve, also from New Zealand, who had tragically died in a rip tide off the New Zealand coast 10 years ago trying to save his 7 year old son. The son was saved by his then 11 year old daughter while the other daughter, then 9, who couldn't swim well, looked on and got help.
On tap for today, more battles with the insurance companies, help with Naomi's math final tomorrow, a longer walk once it warms up, and a visit with my friend Anthony this afternoon.
And he isn't the only evil one. A seventeen year old girl recently broke her 17 year old boyfriend's weed bong. In retaliation, he smashed her lip, bit her hand and bashed her pet bunny to death with a baseball bat. The kids don't know the identity of this unhappy couple. It is not clear how these events affect Naomi-she really was sad about the bunny but matter-of-factly reports everyone else's reactions.
In cyberspace, there is this sweet, young woman in Seattle battling TNBC. (http://heathersjourneytohealth.blogspot.com/)This awful monster popped up even before she was ready to start a family so on top of dealing with the diagnosis of TNBC itself, she had to quickly make decisions about whether having a family were in the cards for her. So unfair! She had a similar chemo to mine and actually had finally finished but has had every nasty side effect that chemo has to offer-numerous infections, fingernails falling off, and the worse, fluid filling up her lungs and the area around the heart. She had to be hospitalized for the latter and they had alot of trouble controlling it. She had to accept that that there was a strong possibility she was going to die and wrote this heart-breaking farewell. But finally she is on the mend and will be released soon.
Even though the temp topped out at 18 yesterday, I was able to take a long walk as they cleared more of the bike path near me. Still queasy but less and less. Nausea is not a side effect of Taxol, which I start next Tuesday so this pukiness should be a thing of the past. Hope, hope, hope. Taxol has its own list of side effects but in general, it is much more tolerable than the AC. My hair might even start growing back.
The other night, Josh brought me "Burn After Reading". Very funny. And the Conchords are back! A really funny show about this 2 man New Zealand band trying to make it in New York. The character Jemaine reminds me so much of my former boss and friend Steve, also from New Zealand, who had tragically died in a rip tide off the New Zealand coast 10 years ago trying to save his 7 year old son. The son was saved by his then 11 year old daughter while the other daughter, then 9, who couldn't swim well, looked on and got help.
On tap for today, more battles with the insurance companies, help with Naomi's math final tomorrow, a longer walk once it warms up, and a visit with my friend Anthony this afternoon.
Tuesday, January 20, 2009
Three week radiation is on!
I had my radiation oncology appt with Dr. Pierce today. At first it did not go well. Her nurse practionner was telling me how they rarely do the 3 week protocol and furthermore, they would like me to start a month after I finish chemo putting it into June when I am done with this ordeal. I was very upset. There seemed to be no end to this mess. Dr. Pierce seemed to know all the details about the Canadian study and the British equivalent-the STARS. She apparently is a personal friend of Dr. Whelan (the Canadian). She said the patients were quite a bit different from myself-for one, they were smaller. She went into an extremely technical explanation why that was important. ( I will look up later to see if Canadians on the whole are smaller than Americans-More Asians, less African-Americans?) Also they didn't go through chemo, estrogen positive, smaller tumors, on and on why I am not a good candidate and she would not recommend it. Having Adriamycin really messes things up even though it will be 11 weeks past my last dose. But questioning her further, she admitted that my long term survival would be the same. The main problem is that I would be more likely to have a poor cosmetic outcome but if I was willing to accept that possiblility, she would do it. Damn, there goes my 2nd career as a centerfold model if my shrunken Frankenbreast didn't put the kibosh on that already. We set up all the times: Simulation: March 24. First dose : April 1, Last dose April 27. Good. Now I don't need to look all over the country for a place that will accept me and then arrange for a place to stay. Most promising: stay with my brother Bruce in Princeton NJ near the Acela train station that would get me to mid-town Manhattan in less than a hour-lots of hospitals doing it there and then I could visit Shanna in Boston on the weekends.
The insurance situation contines to be an incredible mess though we finally got group numbers after being in the system for almost 3 weeks. This insurance requires referral forms for every little thing and also won't accept the speciality pharmacy that hand-delivers my Neulasta. Plus we have to pay 4 times as much for this sucky insurance than the good one(Our former employer gave us the deluxe insurance for a year-now we have to switch to the so-called retirement insurance-I guess I should stop whining as alot of people don't even get that). Health insurance is now our biggest expense and there are numerous deductables. I will be on the phone trying to straighten out numerous, tedious issues for a good part of this afternoon.
Somehow on this blog, all the blogs that I follow have been removed. I have no idea how that happened. I still have an on-going battle with Statcounter to block my cookie so it won't count my visits.
Although cold, it was pretty outside and I was able to get in a 40 minute walk as the bike path behind my house was half cleared. Had to go back and forth a few times but it felt good to keep moving. Will try to repeat today. I had gone out to lunch with my son Josh at our favorite sushi place. I really hope he gets to stay in MI. We had a very nice long talk.
Was very queasy this morning but it seems to be getting better as the day goes on. Hopefully my queasy days are nearly over.
The insurance situation contines to be an incredible mess though we finally got group numbers after being in the system for almost 3 weeks. This insurance requires referral forms for every little thing and also won't accept the speciality pharmacy that hand-delivers my Neulasta. Plus we have to pay 4 times as much for this sucky insurance than the good one(Our former employer gave us the deluxe insurance for a year-now we have to switch to the so-called retirement insurance-I guess I should stop whining as alot of people don't even get that). Health insurance is now our biggest expense and there are numerous deductables. I will be on the phone trying to straighten out numerous, tedious issues for a good part of this afternoon.
Somehow on this blog, all the blogs that I follow have been removed. I have no idea how that happened. I still have an on-going battle with Statcounter to block my cookie so it won't count my visits.
Although cold, it was pretty outside and I was able to get in a 40 minute walk as the bike path behind my house was half cleared. Had to go back and forth a few times but it felt good to keep moving. Will try to repeat today. I had gone out to lunch with my son Josh at our favorite sushi place. I really hope he gets to stay in MI. We had a very nice long talk.
Was very queasy this morning but it seems to be getting better as the day goes on. Hopefully my queasy days are nearly over.
Monday, January 19, 2009
What is 'normal'
About 15 years ago when I was in the middle of dealing with Grave's Disease, the sweet, young doctor assigned to me, "Doogie", asked if I had 'increased urination' or did I ever have to get up in the middle of the night? I asked him whether most people get up in the night-I certainly knew plenty that do who didn't have Grave's Disease. He said that no, getting up in the middle of the night was not normal and he certainly never did. But he was "Doogie" and didn't have alot of life experience.
But now the situation is absurd. Cytoxan is a known bladder irritant and I get up 3 to 4 times a night. Plus I try to stay hydrated to flush it out as quickly as possible. A minor problem in the general scheme of things but one that makes sleep impossible. Still queasy into my 2nd week since treatment but it seems to be decreasing. My tastes have changed considerably. Sweet and chocolate bad: salty things good. Plain water bad-lemon or orange flavored water good. My eyes still burn.
While I was typing this, UM called me to remind me of my radiology oncology consult tomorrow. Fine, but I had no idea that I had one. Hopefully this Dr. P is open to the 3 week Canadian Study. I'm afraid that UM doesn't like to deviate one iota from 'standard protocol' even if there is evidence that there are improved protocols out there. But again, I don't have to stay at UM. I know they do the one week 'mammosite' at St. Joe's which I would not be a candidate for but it least shows that someone there is willing to try something else.
Still cold and snowy and I am antsy. It's MLK Day so Josh is off. He'll take me out for lunch. Finals start tomorrow and it is again pulling teeth trying to keep Naomi on top of her responsibilities. I let her out last night-scary as her friend is clueless driving around in the slush. She got stuck in our driveway. They like to hang-out at Bubble Island on campus. She insists they are not meeting up with anyone. Her friend is very attractive so I am sure they are finding boys out there. Naomi is 'back' with this boyfriend that she never sees. Apparently he is content just to talk to her for hours-she has had a series of young men like this.
But now the situation is absurd. Cytoxan is a known bladder irritant and I get up 3 to 4 times a night. Plus I try to stay hydrated to flush it out as quickly as possible. A minor problem in the general scheme of things but one that makes sleep impossible. Still queasy into my 2nd week since treatment but it seems to be decreasing. My tastes have changed considerably. Sweet and chocolate bad: salty things good. Plain water bad-lemon or orange flavored water good. My eyes still burn.
While I was typing this, UM called me to remind me of my radiology oncology consult tomorrow. Fine, but I had no idea that I had one. Hopefully this Dr. P is open to the 3 week Canadian Study. I'm afraid that UM doesn't like to deviate one iota from 'standard protocol' even if there is evidence that there are improved protocols out there. But again, I don't have to stay at UM. I know they do the one week 'mammosite' at St. Joe's which I would not be a candidate for but it least shows that someone there is willing to try something else.
Still cold and snowy and I am antsy. It's MLK Day so Josh is off. He'll take me out for lunch. Finals start tomorrow and it is again pulling teeth trying to keep Naomi on top of her responsibilities. I let her out last night-scary as her friend is clueless driving around in the slush. She got stuck in our driveway. They like to hang-out at Bubble Island on campus. She insists they are not meeting up with anyone. Her friend is very attractive so I am sure they are finding boys out there. Naomi is 'back' with this boyfriend that she never sees. Apparently he is content just to talk to her for hours-she has had a series of young men like this.
Sunday, January 18, 2009
TV
TV has become too much of a part of my life as I hunker down in cold, snowy chemoland. But it sucks for the most part. Theoretically, the Travel Channel should be interesting but it is full of shows such as that one showing this guy who eats really disgusting things and another showing how much food the host can eat. How come they can't just show nice places to visit? Jan last night wanted to watch 'Survivorman". Another show to avoid if one is the least bit queasy as the host survives by eating disgusting stuff.
I missed my niece's bit part the other night on Law and Order SUV. She's a grad student at Columbia and the show needed 'chemical expertise' and hired her research group for the day. Her hand was filmed pouring acid on to sugar spliced to someone else's body but they had fun and received money spent on a big night out on the town (Manhattan).
Day 48 in chemo prison. Still a tad queasy and tired but as I distance myself from the Red Devil, I hope to feel better. I was beginning to feel quite isolated due to the weather. Brenda however braved yet another snowstorm and picked me up to go out for lunch-a very welcome distraction. Deb then stopped by briefly with some beautiful flowers to lift my spirits. Jan came by for a trash TV marathon. We did watch "Home for the Holidays" which I liked, mainly because Holly Hunter was in it but then we watched an IFC movie-"Naked in NY"-which was really boring but was my idea so I let Jan watch her favorite "survivorman" until I couldn't take it any longer.
There was an article in the paper yesterday updating Naomi's classmate's condition. Last weekend, Anna's former boyfriend had bashed her forehead in with a hammer and left her to die in a snowbank in a park. She is still in a coma, medically induced, but her chances of survival are increasing. Initially it was thought she had no chance at all. She was an all A student planning on going to UM this fall. Unfortunately she had selected this boyfriend who was clearly mentally unstable. Very scary.
I missed my niece's bit part the other night on Law and Order SUV. She's a grad student at Columbia and the show needed 'chemical expertise' and hired her research group for the day. Her hand was filmed pouring acid on to sugar spliced to someone else's body but they had fun and received money spent on a big night out on the town (Manhattan).
Day 48 in chemo prison. Still a tad queasy and tired but as I distance myself from the Red Devil, I hope to feel better. I was beginning to feel quite isolated due to the weather. Brenda however braved yet another snowstorm and picked me up to go out for lunch-a very welcome distraction. Deb then stopped by briefly with some beautiful flowers to lift my spirits. Jan came by for a trash TV marathon. We did watch "Home for the Holidays" which I liked, mainly because Holly Hunter was in it but then we watched an IFC movie-"Naked in NY"-which was really boring but was my idea so I let Jan watch her favorite "survivorman" until I couldn't take it any longer.
There was an article in the paper yesterday updating Naomi's classmate's condition. Last weekend, Anna's former boyfriend had bashed her forehead in with a hammer and left her to die in a snowbank in a park. She is still in a coma, medically induced, but her chances of survival are increasing. Initially it was thought she had no chance at all. She was an all A student planning on going to UM this fall. Unfortunately she had selected this boyfriend who was clearly mentally unstable. Very scary.
Saturday, January 17, 2009
Hibernation
I am tired of being locked in this house due to cold, snow, whatever. It is warming up but more snow is forecasted. Even without cancer, this time would be a challenge but I could at least get away. Last year at this time I was eagerly awaiting Oliver's birth ready to drive the 755 miles at a moment's warning. Not that Boston is all that much toastier, but a new baby! Hard to be depressed when you are expecting your first grandchild. I was very lucky to get there missing a big storm the day after his birth but slipping and sliding the 10 miles to the hospital was manageable.
I don't feel so bad physically today. I did get out to Naomi's game-they won as expected but Coach Steve was unhappy with them as most of them played sloppily. Even though there was no school, Naomi spent the afternoon with the team. Josh came over to deal with his resume. There is some plan in the works that might save him but it's not clear if it will work.
I do spend some time reading up on TNBC. Things I like to read: bigger tumors than mine gone with no sign of return 8 years later. What I don't like to read: brain mets popping up even before chemo is finished. If mets happen, they happen fast (within 3 years). If one survives 5 years without them, generally one is home free.
I don't feel so bad physically today. I did get out to Naomi's game-they won as expected but Coach Steve was unhappy with them as most of them played sloppily. Even though there was no school, Naomi spent the afternoon with the team. Josh came over to deal with his resume. There is some plan in the works that might save him but it's not clear if it will work.
I do spend some time reading up on TNBC. Things I like to read: bigger tumors than mine gone with no sign of return 8 years later. What I don't like to read: brain mets popping up even before chemo is finished. If mets happen, they happen fast (within 3 years). If one survives 5 years without them, generally one is home free.
Friday, January 16, 2009
Frigid!
It is so cold now! Minus 12 and even colder earlier. I awoke in a panic as it was light out and I hadn't heard the usual racket Naomi makes in the morning. The bus comes by at 6:50 am. I found her in her bed but she said school was cancelled. If it is near zero, Spud's paw pads freeze and he just sits down in the snow waiting death rather than walk. It is sunny out-hopefully I can get him out so he can at least pee. He keeps pacing.
Yesterday was hard. You'd think I'd get the routine down by now balancing the poisons. The anti-nausea meds cause dizziness and sleepiness. Steroids cause headaches and restlessness. I stick with the Prilosec to prevent heartburn-so far so good and the Emend. The latter cost $500 for a 3 day supply. The Neulasta is $6000/dose. One could buy 3 cars with what I'll go through Chemoland with Neulasta alone. What do people do without insurance? The most common side effect with Neulasta is bone pain-it stimulates the bone marrow to produce white blood cells. It works. My neck bones hurt the next day after the shot (administered by Steve in my belly) but that's it. People who don't take Neulasta on chemo are at great risk for infections and often end up in the emergency room. The dose dense regimen I am on would be too dangerous without it otherwise my body would need time to recover between doses and the cancer would get a chance too. But I was queasy, depressed, lonely, and bored most of yesterday and the very frigid weather isn't helping.
So far I feel a little bit better today. I might try the cancer yoga class later today if it hasn't been cancelled and the big crosstown rivalry bball game is tonight that presumably is still on. I keep telling myself that this is the hardest week and once I get past it, let the healing begin.
Yesterday was hard. You'd think I'd get the routine down by now balancing the poisons. The anti-nausea meds cause dizziness and sleepiness. Steroids cause headaches and restlessness. I stick with the Prilosec to prevent heartburn-so far so good and the Emend. The latter cost $500 for a 3 day supply. The Neulasta is $6000/dose. One could buy 3 cars with what I'll go through Chemoland with Neulasta alone. What do people do without insurance? The most common side effect with Neulasta is bone pain-it stimulates the bone marrow to produce white blood cells. It works. My neck bones hurt the next day after the shot (administered by Steve in my belly) but that's it. People who don't take Neulasta on chemo are at great risk for infections and often end up in the emergency room. The dose dense regimen I am on would be too dangerous without it otherwise my body would need time to recover between doses and the cancer would get a chance too. But I was queasy, depressed, lonely, and bored most of yesterday and the very frigid weather isn't helping.
So far I feel a little bit better today. I might try the cancer yoga class later today if it hasn't been cancelled and the big crosstown rivalry bball game is tonight that presumably is still on. I keep telling myself that this is the hardest week and once I get past it, let the healing begin.
Thursday, January 15, 2009
My azalea blooms!
When I broke my arm tripping over a tree root while running trails in July 2007, my son-in-law to be (Ramy) bought me an azalea full of red feathery blooms. I've had bad luck with these in the past. They don't like regular potting soil or all purpose plant food. I tried to keep it alive over last winter. By spring, it was 90% dead and I put it outside in my too-ugly--to-be-included-on my patio place where it recovered. By fall, it had completely grew back and was covered with blooms until October. I assumed it would go into hibernation until spring but no, it is now covered with beautiful red blossoms now despite its meager soil reserves and no feeding.
I seem to have a new reader from Stuttgart. Wilkommen Lumia! When I was getting my degree in chemistry, it was required to have a reading knowledge of German as in those days, alot of the chemical literature was in German. So for maybe the first 5 years, I regularly had to translate journal articles but as the world changed, this happened less and less. My strange working vocabulary didn't help me too much while in Germany. Several times that I have been in Europe, at least in France and Switzerland, I would try to speak French but it was immediately assumed I must be German, with a bad accent and they would answer in German. No, please go back to French- I am an American. But I was surprised that they didn't know I was an American from first glance. In Gagliano, they would first ask if I were 'danese"-Danish, as there was a colony of Danes buying up the cheap real estate there, but "tedesche"-German- would be the 2nd guess. I would say 'sono americana' but they know we are always from somewhere else at one point and were very interested in that.
Physically I felt almost normal yesterday but today, not so good. Queasy. I am debating whether to take the Zofran or not. I got an appointment with the dermatology clinic to look at my black spot but haven't heard from the radiologists yet. My support group was cancelled last night due to bad weather. It is sunny and pretty out now but extremely cold. We forgot to let the sink drip overnight and the kitchen sink froze. Saved by the hairdryer.
Over the weekend, a classmate of Naomi's, Anna, was brutally beaten with a hammer (in the head!) and then left to die in the snow by a monstrous ex-boyfriend who apparently doesn't take 'no' for an answer. She is currently in a coma and her chances for survival are slim. Anna was in Naomi's advanced art class and the teacher can't stop crying. Very scary! Need to review yet again signs of possessive, abusive men.
Josh came over last night. He still doesn't know what his work situation is and is very scared. So much doom and gloom here and spreading elsewhere. This is on my mind alot making a full night sleep impossible. I try to read, do puzzles, whatever, to get my mind off of these things.
I seem to have a new reader from Stuttgart. Wilkommen Lumia! When I was getting my degree in chemistry, it was required to have a reading knowledge of German as in those days, alot of the chemical literature was in German. So for maybe the first 5 years, I regularly had to translate journal articles but as the world changed, this happened less and less. My strange working vocabulary didn't help me too much while in Germany. Several times that I have been in Europe, at least in France and Switzerland, I would try to speak French but it was immediately assumed I must be German, with a bad accent and they would answer in German. No, please go back to French- I am an American. But I was surprised that they didn't know I was an American from first glance. In Gagliano, they would first ask if I were 'danese"-Danish, as there was a colony of Danes buying up the cheap real estate there, but "tedesche"-German- would be the 2nd guess. I would say 'sono americana' but they know we are always from somewhere else at one point and were very interested in that.
Physically I felt almost normal yesterday but today, not so good. Queasy. I am debating whether to take the Zofran or not. I got an appointment with the dermatology clinic to look at my black spot but haven't heard from the radiologists yet. My support group was cancelled last night due to bad weather. It is sunny and pretty out now but extremely cold. We forgot to let the sink drip overnight and the kitchen sink froze. Saved by the hairdryer.
Over the weekend, a classmate of Naomi's, Anna, was brutally beaten with a hammer (in the head!) and then left to die in the snow by a monstrous ex-boyfriend who apparently doesn't take 'no' for an answer. She is currently in a coma and her chances for survival are slim. Anna was in Naomi's advanced art class and the teacher can't stop crying. Very scary! Need to review yet again signs of possessive, abusive men.
Josh came over last night. He still doesn't know what his work situation is and is very scared. So much doom and gloom here and spreading elsewhere. This is on my mind alot making a full night sleep impossible. I try to read, do puzzles, whatever, to get my mind off of these things.
Wednesday, January 14, 2009
My Stellar tumor
As I've been accused especially by my children, I exaggerate. The actual word used to describe my tumor in the pathology report was 'stellate' not 'stellar'. In Gagliano, WSU affixed posters (wish I remembered to steal one) inviting townspeople to our cinema class movies in the monastery courtyard entitled "Cinema Sotto le Stelle" or Movies under the Stars. Stella=star. Lots of stars can be seen up in the mountains with little competing light sources and cloudless skies. Of the Romance languages, Italian strays least from its Latin roots: estrella and etoile meaning star in Spanish and French respectively. Medical language is just full of Latin based language with some Greek thrown in for fun so my Italian can be useful. In my brain fog, I managed this time to get get complete copies of all my pathology reports. Interesting reading, at least to me. A lot of flesh taken out, measured carefully and weighed in exquisite detail. Even a lot taken out just to obtain my three nodes, which explains the sizable divot near my armpit. But the most important was the description of my 'star'. The main mass of it measured 3 cm so it did double in size during that month of scheduling delays (which weren't true delays but business as usual and things went very fast by their standards-these need to be tightened!). One of its star points did abut the margins but worse, it had a moon 2 cm away (not attached as I was led to believe and not seen in my original mammogram and sonogram-did it pop up so fast?) that was .9 cm at its largest dimension wholly contained by some stroke of luck in the sizable flesh strip removed but it was too close to one of the other margins to be considered 'good'. Also how they keep track of whats up, down, left side, right side, etc. was interesting. Each side is carefully stained a different color, I counted 6, so they know where to attack next in the case of 'bad' margins. I just assumed they dumped the whole cube into India Ink to stain it. They took a whole lot more flesh out during my 're-incision' carefully detailed. The area near my tumor looked grossly suspicious for residual carcinoma but microscopically benign, which is what counts. Everything was benign, benign, benign for the 2nd surgery. The original biopsy of my spaghetti strings of flesh was not at all enlightening.
So Day 44 of my stay in Chemoland. Not so bad, I am relieved to say. I did feel crappy during the infusion maybe because I nixed the Ativan this time-I don't like being foggy, and pukey shortly after it was done. I did have a very good infusion nurse this time, I wish I could request her. She stayed with me a lot of the time and we had some good talks. I was able to go to Naomi's game later, in which she played mediocrely but not bad. She has an axe to grind with some of the Dexter girls. Over the many years she's played on travel sports with girls from other districts, she has come to the simplistic conclusion that Dexter girls suck and Chelsea girls are cool as she has many friends in the latter school district. Josh lives in Dexter so occasionally we have suggested that she go there instead to school for a fresh start and this sets her off in a rage, I can't stand Dexter bitches. I will never go there! They are all sluts! The score was very lop-sided even though Coach Steve was very kind by laying off the full court press and keeping Tyler off the floor although she did score her 1000 th point last night with much fanfare complete with the band. One of our players, who usually doesn't get alot of court time went in and promptly scored for the other team but this was forgiven. Naomi noted with too much satisfaction that her chief enemy after the game was seen sobbing in the corner, completely humilated by the result and her own poor game. No sympathy from my friend! I did stay up late with Naomi who was in a good mood even though her boyfriend has dumped her yet again but past history shows that this is not final. She admitted to all the puzzles of the outside world she will have to face and everything is a puzzle. But she at least has reached a point in identifying some of the problems and come up with a solution for her survival in that big outside world independent of 'mom'. It will be a rocky road-even rockier if I don't win my battle with TNBC. The number one terror associated with the diagnosis of cancer is not being around to finish raising ones kids. TNBC is especially challenging as it seems to strike younger (than myself) women whose kids are sometimes very young and to use the word that the popular press uses to describe TNBC is that it is 'lethal'. Of course, this word is misused as in 'lethal heat wave' 'lethal snowstorms' that result just in a small amount of increased deaths but very upsetting to the newly diagnosed TNBC person who casually googles TNBC and sees terms like "very lethal" "Very Deadly" and "not curable by traditional means" meaning sucking up Tamixofen won't do us a lick of good.. I am thankful that if I was fated to have this awful disease that it at least waited for me to be 20 years older than my young 'sisters' and I have read that my course might be more favorable due to my age, but at least I got those 20 years of life in. I want and need more.
I did get an interesting e-mail from my former neighbor Katy this morning. She has a daughter 2 years older than Naomi who has presented her with many challenges. Not to invade either of their privacies but a quote Katy made to describe the situation was especially apt.
I have my very own one of those here. She has me on a bungee-cord apron string. " Mom, I need you. Ah! Get out of my sight. No wait, we can be friends, Ha! Who made you God! Leave me alone." I feel like I am living with someone trying out for a role in "schitzo, the musical" on Broadway.
Such is life of a mother dealing with feelings of conflicting independence and dependence.
So Day 44 of my stay in Chemoland. Not so bad, I am relieved to say. I did feel crappy during the infusion maybe because I nixed the Ativan this time-I don't like being foggy, and pukey shortly after it was done. I did have a very good infusion nurse this time, I wish I could request her. She stayed with me a lot of the time and we had some good talks. I was able to go to Naomi's game later, in which she played mediocrely but not bad. She has an axe to grind with some of the Dexter girls. Over the many years she's played on travel sports with girls from other districts, she has come to the simplistic conclusion that Dexter girls suck and Chelsea girls are cool as she has many friends in the latter school district. Josh lives in Dexter so occasionally we have suggested that she go there instead to school for a fresh start and this sets her off in a rage, I can't stand Dexter bitches. I will never go there! They are all sluts! The score was very lop-sided even though Coach Steve was very kind by laying off the full court press and keeping Tyler off the floor although she did score her 1000 th point last night with much fanfare complete with the band. One of our players, who usually doesn't get alot of court time went in and promptly scored for the other team but this was forgiven. Naomi noted with too much satisfaction that her chief enemy after the game was seen sobbing in the corner, completely humilated by the result and her own poor game. No sympathy from my friend! I did stay up late with Naomi who was in a good mood even though her boyfriend has dumped her yet again but past history shows that this is not final. She admitted to all the puzzles of the outside world she will have to face and everything is a puzzle. But she at least has reached a point in identifying some of the problems and come up with a solution for her survival in that big outside world independent of 'mom'. It will be a rocky road-even rockier if I don't win my battle with TNBC. The number one terror associated with the diagnosis of cancer is not being around to finish raising ones kids. TNBC is especially challenging as it seems to strike younger (than myself) women whose kids are sometimes very young and to use the word that the popular press uses to describe TNBC is that it is 'lethal'. Of course, this word is misused as in 'lethal heat wave' 'lethal snowstorms' that result just in a small amount of increased deaths but very upsetting to the newly diagnosed TNBC person who casually googles TNBC and sees terms like "very lethal" "Very Deadly" and "not curable by traditional means" meaning sucking up Tamixofen won't do us a lick of good.. I am thankful that if I was fated to have this awful disease that it at least waited for me to be 20 years older than my young 'sisters' and I have read that my course might be more favorable due to my age, but at least I got those 20 years of life in. I want and need more.
I did get an interesting e-mail from my former neighbor Katy this morning. She has a daughter 2 years older than Naomi who has presented her with many challenges. Not to invade either of their privacies but a quote Katy made to describe the situation was especially apt.
I have my very own one of those here. She has me on a bungee-cord apron string. " Mom, I need you. Ah! Get out of my sight. No wait, we can be friends, Ha! Who made you God! Leave me alone." I feel like I am living with someone trying out for a role in "schitzo, the musical" on Broadway.
Such is life of a mother dealing with feelings of conflicting independence and dependence.
Tuesday, January 13, 2009
3 Week Canadian study
The Canadians and the British for years give the majority of their early breast cancer patients a 3 week course of radiation vs the standard in the US 6 week. Finally this fall the results were in: Canadian researchers divided 1240 patients equally into the 3 vs 6 week arms and looked at the results 10 years later. Slightly less reoccurance in the the 3 week group and similar cosmetic results. They do up the dose for the 3 week gals, which may be a problem for left breast cancer (radiation is tough on the heart if it is on the left side). Various hospitals have now adopted this not-so-new protocol such as Sloan-Kettering, NYU, U of Washington, Rhode Island, and Johns Hopkins but not UM. My onc is setting up an appointment with the radiologist now and said they MAY be amenable to letting me have it. I said I might go elsewhere to get it. I don't have any of the obvious exclusions: large breasts, close to chest wall tumors. My negatives: more than one tumor, one large tumor and being triple neg.
So today was infusion day. I now have all the Red Devil in me that I am allowed in a lifetime. I feel pretty crappy but hoping that in a few days, this too shall pass. My blood counts were good though my red count is falling. Still just under that of a healthy person. Our new insurance won't issue us a number until the end of the week so we had to pay for Emend out of pocket. We should get reimbursed once we get that magic number. Still more bills with unpaid, unpaid, unpaid even though we thought this was all straightened out. I was told to see a dermatologist about the black spot even though it is probably nothing. It is a very dark spot for not having been exposed to the sun.
The school has denied the art teacher's request to have her drop the class. I am appealing. A pain.
Naomi wanted me to watch the OSU vs Illini game that she taped with her just now. Shavelle, who played for Huron a few years ago, had a full ride to OSU and was voted best defensive player in the Big Ten her first year. Naomi really looks up to her, a very sweet girl who mentors quite a few of them. But part of her fascination with Shavelle is that she is Naomi's boyfriends's first cousin. The whole River Rat team is going up to E. Lansing this weekend to watch Shavelle vs MSU. The Lady Rats are now ranked 6th in the State and take on Dexter tonight. Naomi has since healed from last week. I will go tonight even though I feel pukey and tired.
So today was infusion day. I now have all the Red Devil in me that I am allowed in a lifetime. I feel pretty crappy but hoping that in a few days, this too shall pass. My blood counts were good though my red count is falling. Still just under that of a healthy person. Our new insurance won't issue us a number until the end of the week so we had to pay for Emend out of pocket. We should get reimbursed once we get that magic number. Still more bills with unpaid, unpaid, unpaid even though we thought this was all straightened out. I was told to see a dermatologist about the black spot even though it is probably nothing. It is a very dark spot for not having been exposed to the sun.
The school has denied the art teacher's request to have her drop the class. I am appealing. A pain.
Naomi wanted me to watch the OSU vs Illini game that she taped with her just now. Shavelle, who played for Huron a few years ago, had a full ride to OSU and was voted best defensive player in the Big Ten her first year. Naomi really looks up to her, a very sweet girl who mentors quite a few of them. But part of her fascination with Shavelle is that she is Naomi's boyfriends's first cousin. The whole River Rat team is going up to E. Lansing this weekend to watch Shavelle vs MSU. The Lady Rats are now ranked 6th in the State and take on Dexter tonight. Naomi has since healed from last week. I will go tonight even though I feel pukey and tired.
Monday, January 12, 2009
The Black Spot
Now that I am nearly bald, I can see a scary black spot about 5 mm across in front of my ear. I didn't notice it until yesterday. I don't like to stare at my bald self for too long and this spot is usually covered by my eyeglasses stem. I do have a variety of light brown freckles all over my body but none this dark. So my first thought-melanoma- even though this area has not been exposed to the sun. I'll see what the oncologist thinks tomorrow. Meanwhile I'll read up on melanoma chemo. Hopefully my poisons will work on it too, if that's what it is. It is of one color, absolutely flat and there is no bleeding-all of which argue against melanoma. Probably just a birthmark that I've always had but I haven't been bald since I was a few months old and noone is alive who would have seen it. In all my very early pictures, I am wearing bonnets.
Very cold out and I am antsy to get moving before chemo.
Josh's job is very shaky no thanks to the economy. He should know his fate by the end of the week.
Decisions will be made about Naomi and school today.
A mom came over to visit last night and I tried to share some wine with her but have completely lost my taste for it. Not good for me anyway but the poisons should be at a low level now. The effects of them remain, however. No hair on my legs whatsoever even though it's been 6 weeks since I shaved. They don't feel nice as they would have after a shave. My skin is all rough and scaly, which is completely new. No working oil glands whatsoever. I am becoming paler and paler. I have vague burning sensations up and down my digestive tract beginning with my burning lips. My eyes burn. I spend more of my life asleep. Today is Day 42 in chemoland, it has seemed even longer but even more depressing is the 70 days I have left. Tomorrow is the last of the Red Devil. The way things have been going is that the rest of the week will be tough but hopefully in a week, the effects will ease up and then it's on to Taxol, which most people swear up and down is so much easier. I really, really hope so.
Very cold out and I am antsy to get moving before chemo.
Josh's job is very shaky no thanks to the economy. He should know his fate by the end of the week.
Decisions will be made about Naomi and school today.
A mom came over to visit last night and I tried to share some wine with her but have completely lost my taste for it. Not good for me anyway but the poisons should be at a low level now. The effects of them remain, however. No hair on my legs whatsoever even though it's been 6 weeks since I shaved. They don't feel nice as they would have after a shave. My skin is all rough and scaly, which is completely new. No working oil glands whatsoever. I am becoming paler and paler. I have vague burning sensations up and down my digestive tract beginning with my burning lips. My eyes burn. I spend more of my life asleep. Today is Day 42 in chemoland, it has seemed even longer but even more depressing is the 70 days I have left. Tomorrow is the last of the Red Devil. The way things have been going is that the rest of the week will be tough but hopefully in a week, the effects will ease up and then it's on to Taxol, which most people swear up and down is so much easier. I really, really hope so.
Sunday, January 11, 2009
Cancer myth-your tumor has been there for years
When someone first finds out they have a tumor, often they can not schedule a biopsy for 2 weeks or so and in my case, surgery for 6 weeks! (it was later moved up). Meanwhile the patient is going crazy convinced this monster is growing and spreading and there isn't any-f-ing thing she can do about it but fret. When she expresses her extreme anxiety at the situation, she is told
Relax! Your tumor has been there for years. Do you think a few weeks are going to make a difference?
Well yes I do. In my case, my nice petite tumor in the beginning of September measuring in at 1.6 cm at its largest dimension (and all the dimensions were measured down to the millimeter)morphed by the beginning of October into 3 cm. The measurements in September were from an ultrasound: the same technology which enabled my daughter to see a cleft in Oliver's lip when he was an 18 week fetus and for my sweet oncology social worker the other day to notice distinctive differences in her 20 week fetal twins so she knows the girls won't look the least bit alike. Well maybe the difference in size was due to the tentacles that didn't show, but I think it grew such that my survival, on paper at least, went from 80% to 70%. I was reminded by this as the other lady in the group Friday said her tumor doubled in a month. This tumor is estrogen and Her2 positive. Also it's in her nodes. Numerous stories such as this exist.
Another argument I have showing this indeed is a myth and probably a statement to prevent possible lawsuits is this:
In 2002, that huge women's Collective Health Study on replacement hormones was halted because too many women taking the replacements (HRT) had breast cancer and heart attacks compared to the women on no HRT. Many women panicked and chucked the Prem-Pro. Just a few years later, a big drop in newly diagnosed breast cancer patients is noticed largely attributed to the drop in Prem-Pro's and its ilk use. This would be the estrogen positive kind: the slow growing, relatively indolent variety. Now if BC really takes 20 years to rear its very ugly head, this would not be observed in 4 years. My point: if there is any interest in improving the survival rate of cancer patients in general would be to speed up the time between identification and treatment.
Usually I get my mammograms in May but this year, bad idea as it may or may not be, I decided to wait until after my trip to Italy. I was very lucky (as it turns out) to get an appointment within a week in September (instead of the usual 6 month wait) and the 1.6 cm thing was observed (but not felt even when I knew it was there). How big would it have been in May 2008? How big would it have been in May 2009?
Another study I read about today and this has nothing to do with cancer: comparative lifespans between those with 'good' initials and 'bad' ones. An example of each would be VIP and DUD. People with the former lived 4 years longer than the latter on the average. I've been told by the recipients at least, that I suck at naming babies. Josh has complained the least (or not at all) yet I gave him the life shortening initials: JRK.
No moms group last night due to the snow.One mom brought me today yummy soup and another will come over later. Thank-you, friends!!! Two more relatively good days until I am poisoned again.
Relax! Your tumor has been there for years. Do you think a few weeks are going to make a difference?
Well yes I do. In my case, my nice petite tumor in the beginning of September measuring in at 1.6 cm at its largest dimension (and all the dimensions were measured down to the millimeter)morphed by the beginning of October into 3 cm. The measurements in September were from an ultrasound: the same technology which enabled my daughter to see a cleft in Oliver's lip when he was an 18 week fetus and for my sweet oncology social worker the other day to notice distinctive differences in her 20 week fetal twins so she knows the girls won't look the least bit alike. Well maybe the difference in size was due to the tentacles that didn't show, but I think it grew such that my survival, on paper at least, went from 80% to 70%. I was reminded by this as the other lady in the group Friday said her tumor doubled in a month. This tumor is estrogen and Her2 positive. Also it's in her nodes. Numerous stories such as this exist.
Another argument I have showing this indeed is a myth and probably a statement to prevent possible lawsuits is this:
In 2002, that huge women's Collective Health Study on replacement hormones was halted because too many women taking the replacements (HRT) had breast cancer and heart attacks compared to the women on no HRT. Many women panicked and chucked the Prem-Pro. Just a few years later, a big drop in newly diagnosed breast cancer patients is noticed largely attributed to the drop in Prem-Pro's and its ilk use. This would be the estrogen positive kind: the slow growing, relatively indolent variety. Now if BC really takes 20 years to rear its very ugly head, this would not be observed in 4 years. My point: if there is any interest in improving the survival rate of cancer patients in general would be to speed up the time between identification and treatment.
Usually I get my mammograms in May but this year, bad idea as it may or may not be, I decided to wait until after my trip to Italy. I was very lucky (as it turns out) to get an appointment within a week in September (instead of the usual 6 month wait) and the 1.6 cm thing was observed (but not felt even when I knew it was there). How big would it have been in May 2008? How big would it have been in May 2009?
Another study I read about today and this has nothing to do with cancer: comparative lifespans between those with 'good' initials and 'bad' ones. An example of each would be VIP and DUD. People with the former lived 4 years longer than the latter on the average. I've been told by the recipients at least, that I suck at naming babies. Josh has complained the least (or not at all) yet I gave him the life shortening initials: JRK.
No moms group last night due to the snow.One mom brought me today yummy soup and another will come over later. Thank-you, friends!!! Two more relatively good days until I am poisoned again.
Saturday, January 10, 2009
More snow....more cold..
We received our heating bill for December-$400!!! It was reported that DTE purchased all the natural gas it needed for the season at its peak price in July so even though the price of natural gas has fallen dramatically, Michigan residents still have to pay through the nose for it. Someone somewhere turned a good profit. I smell a rat.
One of the participants yesterday in the support group used that Oncotype program to assess her need for chemo. This company takes her tumor, looks at 21 tumor markers correlated with metastasis, and then assigns her to a risk category. If one scores less than 18, they say it is safe to skip chemo. Her tumor was given a score of 19 (out of 100). Her tumor was small, estrogen positive, node negative, and easy to remove. She went for the chemo as she really wants to survive for her elementary school aged kids. No Red Devil for her as she is low risk. Chemo Lite. She was warned that she still might have functioning ovaries when this is done and they need a plan to block them so she is mulling over the numerous options for that.
Oncotype doesn't deal with estrogen negative tumors. It's not clear if we have different markers or that we are at such high risk anyway, little info would be gained that would alter treatment so the cost (~$3500) would not be justified. It might fine tune the prognosis, instead of that sketchy 70-75% survival rate I was given maybe they could bump it up to 90% if I am free of the bad tumor factors. Or maybe my survival would be pegged at less than 50% if it is found that I am chockful of them.
Both ladies don't take the Neulasta and both have gotten bad colds. I could see why Ms. Chemo Lite didn't get it but the other lady is on a similar chemo to mine.
Naomi got up suspiciously early today, dolled herself up, and then said she needed to walk to the store to replenish her make-up supplies. It is really cold out right now. She called to say she met up with her pal Morgan and will spend an hour with her. Oh, could I say "Hi" to Morgan? and the phone went dead. Update: she came back. She said Morgan went on the phone and it was dead and Naomi said she then wasn't sure if I really asked to talk to Morgan. Guess I'll have to trust her on this one. Morgan was there to get nails. I told her to tell Morgan that the fumes from the nail glue aren't good for the baby.
Mom's group tonight. My job is dessert. As I am at the end of my cycle, I'll hopefully have enough energy to make one. Naomi now is offering to do it for me.
One of the participants yesterday in the support group used that Oncotype program to assess her need for chemo. This company takes her tumor, looks at 21 tumor markers correlated with metastasis, and then assigns her to a risk category. If one scores less than 18, they say it is safe to skip chemo. Her tumor was given a score of 19 (out of 100). Her tumor was small, estrogen positive, node negative, and easy to remove. She went for the chemo as she really wants to survive for her elementary school aged kids. No Red Devil for her as she is low risk. Chemo Lite. She was warned that she still might have functioning ovaries when this is done and they need a plan to block them so she is mulling over the numerous options for that.
Oncotype doesn't deal with estrogen negative tumors. It's not clear if we have different markers or that we are at such high risk anyway, little info would be gained that would alter treatment so the cost (~$3500) would not be justified. It might fine tune the prognosis, instead of that sketchy 70-75% survival rate I was given maybe they could bump it up to 90% if I am free of the bad tumor factors. Or maybe my survival would be pegged at less than 50% if it is found that I am chockful of them.
Both ladies don't take the Neulasta and both have gotten bad colds. I could see why Ms. Chemo Lite didn't get it but the other lady is on a similar chemo to mine.
Naomi got up suspiciously early today, dolled herself up, and then said she needed to walk to the store to replenish her make-up supplies. It is really cold out right now. She called to say she met up with her pal Morgan and will spend an hour with her. Oh, could I say "Hi" to Morgan? and the phone went dead. Update: she came back. She said Morgan went on the phone and it was dead and Naomi said she then wasn't sure if I really asked to talk to Morgan. Guess I'll have to trust her on this one. Morgan was there to get nails. I told her to tell Morgan that the fumes from the nail glue aren't good for the baby.
Mom's group tonight. My job is dessert. As I am at the end of my cycle, I'll hopefully have enough energy to make one. Naomi now is offering to do it for me.
Friday, January 9, 2009
When it rains, it pours or at least snows real hard
Last night was pure hell. I finally spoke to Naomi's art teacher to figure out what was going on. This class is an advanced class for serious art students who are highly motivated. For Naomi, it was like taking calculus with only a year of algebra under her belt. Actually she would have done better in calculus-she does have some math abilities. Naomi's story was that she did the assignments though turned them late and they weren't yet graded. I was hoping all would be well if this teacher would just get around to grading them and wondered to her by e-mail, why wouldn't she just do that. Because nothing was done that fit the requirements of the assignments. Naomi didn't understand these requirements and spent much of the time staring into space. So I got a long lecture on Naomi's many deficiencies and what Naomi needs to do to survive in life. Meanwhile Naomi is eavesdropping ( I tried to no avail to get Steve to help keep her away so we'd have some privacy) She is furious with me for not believing her and not taking her side. It is very difficult to listen to someone go on and on about your 'defective' child with the underlying message that you are a crappy parent. Nevermind that I grew up in an extremely dysfunctional family but still managed to be responsible and do well in school. It is sometimes just too much-dealing with this cancer and having to deal with Naomi, largely by myself. I finally manage to settle Naomi down and plan our next steps. If a child doesn't feel that at least someone isn't on their side, really bad things can happen. She so far has managed to steer clear of lots of dangerous sidelines. Keeping her occupied in sports has helped. Telling her how awful she is really won't help. I spent most of the night up dwelling on what do I need to do to set her right.
She is injured again. This time her knee. She usually recovers quickly but probably couldn't play tonight. The game tonight has been cancelled due to another (ANOTHER) storm. Good, as this game was 50 miles away in Temperance on the Ohio border.
Josh is not too optimistic about his job though he has a back-up plan here in town. He usually is quite cheerful but he is down.
I really wanted to see Patrick Swayze's interview the other night about his battle with pancreatic cancer but I fell asleep. Should have taped it.
Some positives:
It was very pretty out yesterday and I went for 3-4 mile walk. It was very calming.
There's a woman from MA (another TNBC warrior) Lesa who got on my site. She has a small homemade card company that sends cards to breast cancer warriors in treatment to improve their spirits. I got mine today. It was very nice. (LittleLifePreservers.com)
I went to a breast cancer support group today at the Wellness Center that Whole Foods seems to support. Only two others in the group but they were interesting ladies. (usually there are more but the snow storm kept them away maybe).The facilitator looked like a 6 foot Kirsten Dunst with a baby bump-twins. One woman had the exact same experience I had at Fran Coy but she just walked out. Afterwards, they gave us a catered lunch by Paesano's and I picked up a new hat. Everyone was very nice and chatty.
And I've read the above and realize that I am making Steve sound awful because he doesn't know how to handle Naomi. He has been by my side for the past 3 months waiting on me hand and foot and trying to protect me from all kinds of headaches. One couldn't ask for a better husband.
She is injured again. This time her knee. She usually recovers quickly but probably couldn't play tonight. The game tonight has been cancelled due to another (ANOTHER) storm. Good, as this game was 50 miles away in Temperance on the Ohio border.
Josh is not too optimistic about his job though he has a back-up plan here in town. He usually is quite cheerful but he is down.
I really wanted to see Patrick Swayze's interview the other night about his battle with pancreatic cancer but I fell asleep. Should have taped it.
Some positives:
It was very pretty out yesterday and I went for 3-4 mile walk. It was very calming.
There's a woman from MA (another TNBC warrior) Lesa who got on my site. She has a small homemade card company that sends cards to breast cancer warriors in treatment to improve their spirits. I got mine today. It was very nice. (LittleLifePreservers.com)
I went to a breast cancer support group today at the Wellness Center that Whole Foods seems to support. Only two others in the group but they were interesting ladies. (usually there are more but the snow storm kept them away maybe).The facilitator looked like a 6 foot Kirsten Dunst with a baby bump-twins. One woman had the exact same experience I had at Fran Coy but she just walked out. Afterwards, they gave us a catered lunch by Paesano's and I picked up a new hat. Everyone was very nice and chatty.
And I've read the above and realize that I am making Steve sound awful because he doesn't know how to handle Naomi. He has been by my side for the past 3 months waiting on me hand and foot and trying to protect me from all kinds of headaches. One couldn't ask for a better husband.
Thursday, January 8, 2009
Insurance purgatory
Received a whole series of bills yesterday from November and December full of uncovered, uncovered, uncovered charges. Thousands of dollars. Turns out UM used my new insurance number for the November charges and the old number for the December. Steve did all the phone calling. Hopefully all is fixed. But for more fun, today I start on a new policy with a completely different insurance company and Steve will need to spend sometime explaining this to the hospital Tuesday when I go for my fourth infusion-the last of the Red Devil. We won't have cards yet-just a number they can call.
I did get an e-mail from the owner of Wig Salon who said he was incredulous that I was denied a new receipt with the updated charge on it and will fix it. I also managed to clean up some annoying item concerning my mother's estate. Before she died, I was her conservator. After she died I was her personal representative and all her assets had to be relabelled as estate accounts before they could be distributed. One little account that I didn't even know existed was labelled as an estate account. It only amounted to 86 cents but conceivably, the brokerage house could charge management fees on it. The brokerage house will make it go away without me having to fill out reams of paperwork that always needs a bank stamp. Simple notaries won't do.
Harder to clean-up is the Naomi situation though I think the problem is narrowed down to one pain-in-the-neck teacher. This person has ignored my e-mails. Maybe I should show up there sans wig. Naomi came home from practice with her t-shirt smeared with blood-Jasmine's elbow caught her in the mouth but she was in a good mood. She's got her game back. Naomi can be very sweet on rare occasions but she has such a hard time dealing with frustration and everything, everything frustrates her. One thing that can be said for her is that she has balls. Situations that would strongly intimidate the average teenager don't faze her a bit. She is relatively calm shooting free-throws with all eyes on her though the coach's eyes count the most. She never minded being a soccer goalie because she never thought any goals let in were her fault. (this is rare-most goalies feel real bad even if it isn't their fault.) She and her buddy during middle school would step right up to boys and challenge them to a game of b-ball. During that time, she entered a street ball tournament as a boy stuffing her hair into a cap and wearing very baggy clothes. Her teammates were these very skilled African-American boys who were quite a bit smaller than her. They had asked her to be their post. They were doing pretty good until the final rounds in which they faced boys bigger than her who were very skilled at streetball. It would take a while until someone would say, the big white one, I think that's a girl. However as she got older, her practice of showing up to the Y all painted pretty demanding to be let into a game turned into a different game than she had planned. These boys now had hormones and so did she. I had to put an end to that-not to all the hormones (wish I could) but to the Y visits.
We were able to eat at my favorite Japanese restaurant for lunch. I could see the site head of my former employer with his daughter across the room. Not clear if he saw me. Even though our site was huge, he seemed to know alot about me due to my educational outreach work and the one year that I was responsible for originally synthesizing 10% of the corporation's development candidates despite there being 600-700 chemists worldwide in the company.
I did take a 2 mile walk in the snow. Too slippery for running and today there's even more snow.
Josh stopped by. More huge cutbacks scheduled at his work. He is considered 'critical' but he isn't sure this will save him. Michigan is ground zero for the country's deepening depression. Sad news every day. I just can't see how this will end but have plenty of ideas how it started.
I did get an e-mail from the owner of Wig Salon who said he was incredulous that I was denied a new receipt with the updated charge on it and will fix it. I also managed to clean up some annoying item concerning my mother's estate. Before she died, I was her conservator. After she died I was her personal representative and all her assets had to be relabelled as estate accounts before they could be distributed. One little account that I didn't even know existed was labelled as an estate account. It only amounted to 86 cents but conceivably, the brokerage house could charge management fees on it. The brokerage house will make it go away without me having to fill out reams of paperwork that always needs a bank stamp. Simple notaries won't do.
Harder to clean-up is the Naomi situation though I think the problem is narrowed down to one pain-in-the-neck teacher. This person has ignored my e-mails. Maybe I should show up there sans wig. Naomi came home from practice with her t-shirt smeared with blood-Jasmine's elbow caught her in the mouth but she was in a good mood. She's got her game back. Naomi can be very sweet on rare occasions but she has such a hard time dealing with frustration and everything, everything frustrates her. One thing that can be said for her is that she has balls. Situations that would strongly intimidate the average teenager don't faze her a bit. She is relatively calm shooting free-throws with all eyes on her though the coach's eyes count the most. She never minded being a soccer goalie because she never thought any goals let in were her fault. (this is rare-most goalies feel real bad even if it isn't their fault.) She and her buddy during middle school would step right up to boys and challenge them to a game of b-ball. During that time, she entered a street ball tournament as a boy stuffing her hair into a cap and wearing very baggy clothes. Her teammates were these very skilled African-American boys who were quite a bit smaller than her. They had asked her to be their post. They were doing pretty good until the final rounds in which they faced boys bigger than her who were very skilled at streetball. It would take a while until someone would say, the big white one, I think that's a girl. However as she got older, her practice of showing up to the Y all painted pretty demanding to be let into a game turned into a different game than she had planned. These boys now had hormones and so did she. I had to put an end to that-not to all the hormones (wish I could) but to the Y visits.
We were able to eat at my favorite Japanese restaurant for lunch. I could see the site head of my former employer with his daughter across the room. Not clear if he saw me. Even though our site was huge, he seemed to know alot about me due to my educational outreach work and the one year that I was responsible for originally synthesizing 10% of the corporation's development candidates despite there being 600-700 chemists worldwide in the company.
I did take a 2 mile walk in the snow. Too slippery for running and today there's even more snow.
Josh stopped by. More huge cutbacks scheduled at his work. He is considered 'critical' but he isn't sure this will save him. Michigan is ground zero for the country's deepening depression. Sad news every day. I just can't see how this will end but have plenty of ideas how it started.
Wednesday, January 7, 2009
Second guessing
Five years from now, I am sure that TNBC will be treated differently. There are so many tumor markers to sort out and target. For the estrogen positive folks, there is a company that figures out what markers you have, correllates them with the risk of metastasis, and gives you a risk category so you can decide if chemo is worth it. To my knowlegde, this isn't done with TNBC. There are markers, each associated with some risk, but if you have a tumor of any size, chemo is highly recommended. The marker they have the most data on is VEGF, which is responsible for the tumor getting a blood supply. There is a drug out there, Avastin, which is approved for metastatic breast cancer, that targets it. There are on-going clinical trials to see if it is helpful in early stage tnbc. There is a woman living in Ann Arbor with TNBC diagnosed the same time as me with a similar tumor that is treated at the other cancer center on it. I am annoyed this wasn't offered to me and that my tumor wasn't checked for this factor. Tumors with large amounts of this factor are very bloody-dense capillaries. I did ask the surgeon if my tumor was particularly bloody. No. But actually she doesn't know as she probably didn't cut right through it. Need to read (and have!!) that pathology report.
Physically I don't feel so bad. We were able to take a 2 mile walk yesterday although the slippery weather today, will make a walk difficult. I drank a little coffee today though I feel a little queasy. I have no more working oil glands due to chemo and my abrupt estrogen depletion (threw the Prem-Pro away the minute I found out I had a tumor) so I have to slather on lotions constantly.
I openned my e-mail this morning to find a very troubling one from the school. Naomi is up to her lying tricks again. I had a talk with her last night and she made me feel that everything was under control. I cannot have any peace of mind while this is going on. So unfair of her! So unfair I have cancer and a demon child! Sometimes I can forget I have the cancer, although hard when I am exhausted, pukey, and bald. I can tell myself that this misery is just temporary and that a year from now or sooner, it will be just an unpleasant memory like my broken arm. I do know from others that are now there that there is no peace because the monster can come back but with some self-delusion, I might be able to ignore it. Naomi has to be dealt with now and it is so incredibly hard.
I am also sensitive to probably imaginary slights. One of my 'followers' has cut me off. I don't know if I was too positive, too negative or too boring. It really shouldn't bother me.
Physically I don't feel so bad. We were able to take a 2 mile walk yesterday although the slippery weather today, will make a walk difficult. I drank a little coffee today though I feel a little queasy. I have no more working oil glands due to chemo and my abrupt estrogen depletion (threw the Prem-Pro away the minute I found out I had a tumor) so I have to slather on lotions constantly.
I openned my e-mail this morning to find a very troubling one from the school. Naomi is up to her lying tricks again. I had a talk with her last night and she made me feel that everything was under control. I cannot have any peace of mind while this is going on. So unfair of her! So unfair I have cancer and a demon child! Sometimes I can forget I have the cancer, although hard when I am exhausted, pukey, and bald. I can tell myself that this misery is just temporary and that a year from now or sooner, it will be just an unpleasant memory like my broken arm. I do know from others that are now there that there is no peace because the monster can come back but with some self-delusion, I might be able to ignore it. Naomi has to be dealt with now and it is so incredibly hard.
I am also sensitive to probably imaginary slights. One of my 'followers' has cut me off. I don't know if I was too positive, too negative or too boring. It really shouldn't bother me.
Tuesday, January 6, 2009
Less queasy
Finally the Red Devil is releasing its hold on me. Still not ready for coffee but I do feel much better. I went to Washtenaw Medical Supply yesterday for wig supplies. I should have gone there first (Not Fran Coy!!!) as the lady there is very helpful but its name didn't sound too promising. I bought a cute hat. The wig lady said I really didn't need special shampoo and gave me free wig liners.
Another place to avoid in cyberspace is Wig Salon. I had ordered the "elusive' and they said it was in transit and e-mailed me a receipt. I thought everything was fine until a few days later when I got an e-mail saying the 'elusive' was not available but for $30 more, I could have the 'lighten-up". No new receipt. I eventually got the ugly 'lighten-up' (in size petite-I am not a petite anything)and have been begging repeatedly for a receipt with the new price on it so I could submit it to the insurance company. They finally responded to my barage of e-mails saying that they could not give me a new receipt-something about insurance fraud. WTF! Well then they better not charge me anymore than what was on my original receipt. I have to wait for my credit card bill. Meanwhile on the 7th, I officially change insurance companies so I am in for a battle on this wig.
But Steve and I were able to out to lunch, go shopping, and later take a walk although my tolerance of cold really has changed alot. Later Jan came over to belatedly celebrate her birthday with a tiramisu torte. Naomi didn't return until 11. Not much details on the game other than she played badly. Her replacement got a good write-up in the paper and Huron remains undefeated though it still hasn't cracked the top 10 in state rankings. (it's around 12 to 15) The boys' program is now 7.
Another place to avoid in cyberspace is Wig Salon. I had ordered the "elusive' and they said it was in transit and e-mailed me a receipt. I thought everything was fine until a few days later when I got an e-mail saying the 'elusive' was not available but for $30 more, I could have the 'lighten-up". No new receipt. I eventually got the ugly 'lighten-up' (in size petite-I am not a petite anything)and have been begging repeatedly for a receipt with the new price on it so I could submit it to the insurance company. They finally responded to my barage of e-mails saying that they could not give me a new receipt-something about insurance fraud. WTF! Well then they better not charge me anymore than what was on my original receipt. I have to wait for my credit card bill. Meanwhile on the 7th, I officially change insurance companies so I am in for a battle on this wig.
But Steve and I were able to out to lunch, go shopping, and later take a walk although my tolerance of cold really has changed alot. Later Jan came over to belatedly celebrate her birthday with a tiramisu torte. Naomi didn't return until 11. Not much details on the game other than she played badly. Her replacement got a good write-up in the paper and Huron remains undefeated though it still hasn't cracked the top 10 in state rankings. (it's around 12 to 15) The boys' program is now 7.
Monday, January 5, 2009
No, I do not accept your cancer card
The above is Naomi's policy. She is sticking to it with a tenacity that one would have to admire if it wasn't so selfish. Clothes thrown around the place, dirty dishes left under beds in her room, no step and fetching it for her. Her routine will not be altered one iota by cancer. The 2 weeks she had off gave me some relief in that I didn't have to keep track of school projects that needed to be done. Of course there is that paper due on the Friday before break that she got the snow day reprieve. But of course it is now due today and absolutely no work was done on it. The topic: Things we take for granted. How easy is that! The paper would write itself on how she takes good old mom for granted. She eventually settled on writing about this bball player in her travel club who had everything going for her and then was run over by a truck while she was vacationing in Spain. Her team wore pink (Natalya's favorite color) and her number for a year.
Yep it probably is all my fault.. I have tried every approach to try to convert her into a reasonable person. Steve has given up long ago. If I don't survive this mess, she will not make it. Even if I do, the road will be very rocky. Suffice it to say, it is profoundly stressful and depressing. And I still feel horrible even though it has been almost a week since I was poisoned.
Sunny picked up a tick romping in the park in toasty Maryland so Josh came over to borrow my good tweezers to remove the nasty thing. Hopefully I will get them back though the Red Devil has kindly relieved me of any immediate need for them.
It looks nice outside. Yesterday, the sidewalks were coated with ice although I don't know if I had the energy to even try to walk. I was running just a week ago. I will get out of the house today if only to get wig supplies. My scalp is very sensitive. I can not stand under the shower.
Naomi does have a game tonight but it is 60 miles away. I'll miss that one.
Yep it probably is all my fault.. I have tried every approach to try to convert her into a reasonable person. Steve has given up long ago. If I don't survive this mess, she will not make it. Even if I do, the road will be very rocky. Suffice it to say, it is profoundly stressful and depressing. And I still feel horrible even though it has been almost a week since I was poisoned.
Sunny picked up a tick romping in the park in toasty Maryland so Josh came over to borrow my good tweezers to remove the nasty thing. Hopefully I will get them back though the Red Devil has kindly relieved me of any immediate need for them.
It looks nice outside. Yesterday, the sidewalks were coated with ice although I don't know if I had the energy to even try to walk. I was running just a week ago. I will get out of the house today if only to get wig supplies. My scalp is very sensitive. I can not stand under the shower.
Naomi does have a game tonight but it is 60 miles away. I'll miss that one.
Sunday, January 4, 2009
How are you?
An innocent greeting. How do you respond to someone who hasn't seen you for a while? Fine?
Sadly I am not fine. New damage-the soles of my feet feel like I had been walking on rocks. Leg hair almost gone (that's actually a good thing). Nausea that won't go away. Now my back hurts but it is probably due to me lying around all the time. Steve got me raspberry Snapple as a caffeine source as coffee is out and a few sips later, I realized it was spoiled. Hopefully my immune system will be able to handle that but it increased my queasiness, which I thought would be gone by now.
I got a few things done yesterday. Rounded up all the receipts for my stay in Italy and submitted them. (This was part of my retraining allowance-don't ask me how I will make a career of knowing all things Italian). Wrote a note to the neighbor who is facing BC also and hand-delivered. (So far no response). There's rumors of yet another woman-a soccer mom whose son was in my carpool for many years-facing the same demon. I will have to check that one out with a certain someone who knows all but is kind of a bitch to deal with. It was sunny and calm so I went for a walk. About halfway through I came upon T, a former co-worker smoking a cigar (got to stay upwind) and feeding the squirrels who innocently asked the title question. I whipped my hat off briefly. I am so crude. We were once very good friends but my employer firing him (as it ended up firing all my good friends-one by one until only I remained and then it closed the whole place down) had made things awkward. He works for a small company started by a friend of mine that is doing quite well. Actually several of my friends are there. I suppose if it becomes necessary for one of us to work (I vote Steve), working there parttime would be a possibility. He invited me in and I had tea with him and his very sweet wife C reliving the good old days. He had been in the cancer group making among other things, Red Devil analogs. I've made Red Devil analogs myself. So far, nothing has replaced this foul tasting, body destroying substance that I am hoping will save my life.
Deb came over with lentil soup and cornbread. I was able to eat the cornbread and Steve says the soup is good but my queasiness made it impossible for me to try it. Maybe today. But I enjoyed her visit.
Sadly I am not fine. New damage-the soles of my feet feel like I had been walking on rocks. Leg hair almost gone (that's actually a good thing). Nausea that won't go away. Now my back hurts but it is probably due to me lying around all the time. Steve got me raspberry Snapple as a caffeine source as coffee is out and a few sips later, I realized it was spoiled. Hopefully my immune system will be able to handle that but it increased my queasiness, which I thought would be gone by now.
I got a few things done yesterday. Rounded up all the receipts for my stay in Italy and submitted them. (This was part of my retraining allowance-don't ask me how I will make a career of knowing all things Italian). Wrote a note to the neighbor who is facing BC also and hand-delivered. (So far no response). There's rumors of yet another woman-a soccer mom whose son was in my carpool for many years-facing the same demon. I will have to check that one out with a certain someone who knows all but is kind of a bitch to deal with. It was sunny and calm so I went for a walk. About halfway through I came upon T, a former co-worker smoking a cigar (got to stay upwind) and feeding the squirrels who innocently asked the title question. I whipped my hat off briefly. I am so crude. We were once very good friends but my employer firing him (as it ended up firing all my good friends-one by one until only I remained and then it closed the whole place down) had made things awkward. He works for a small company started by a friend of mine that is doing quite well. Actually several of my friends are there. I suppose if it becomes necessary for one of us to work (I vote Steve), working there parttime would be a possibility. He invited me in and I had tea with him and his very sweet wife C reliving the good old days. He had been in the cancer group making among other things, Red Devil analogs. I've made Red Devil analogs myself. So far, nothing has replaced this foul tasting, body destroying substance that I am hoping will save my life.
Deb came over with lentil soup and cornbread. I was able to eat the cornbread and Steve says the soup is good but my queasiness made it impossible for me to try it. Maybe today. But I enjoyed her visit.
Saturday, January 3, 2009
Walking Oliver
Shanna just called to alert me to Oliver's video on Facebook of him walking at 11 months. When he was younger, Oliver expressed no interest in flipping himself over at the usual time and it was assumed he wouldn't do all those physical milestones until later but now he is walking before the average age so all is good. He is laughing and very proud of himself.
This queasiness will not stop. I am waiting for the Zofran to kick in. It makes me dizzy. I spent most of yesterday lying in bed as I don't feel the queasiness as much until I try to move. Since it finally did get above freezing, I did take a mile walk as I hate the thought of losing all my muscle tone due to this mess. It was sunny out and it did boost my mood, but I was dizzy.
Since I sleep so much during the day now, that means I am up a good portion of the night. Generally this is not good as I tend to think most negatively then. I am surprisingly not as depressed as I thought I'd be but this is definitely a challenge. I really want this experience to be over! I keep promising myself that the second half will be much better. At least no nausea.
Naomi is on her way to Detroit to play Detroit Community. The criteria to get into that school: must be able to play bball at a high level! If it weren't for this, I'd go watch and then stop in Ferndale for pho at the Flytrap. Their pho is so good!
So it is now sunny though probably very cold. Maybe if I could walk without feeling faint, I'll go out. Running is out of the question. It is Jan's birthday today but I don't know what I could do to celebrate it. Deb will come over later with soup. Hopefully the queasiness will be gone then.
This queasiness will not stop. I am waiting for the Zofran to kick in. It makes me dizzy. I spent most of yesterday lying in bed as I don't feel the queasiness as much until I try to move. Since it finally did get above freezing, I did take a mile walk as I hate the thought of losing all my muscle tone due to this mess. It was sunny out and it did boost my mood, but I was dizzy.
Since I sleep so much during the day now, that means I am up a good portion of the night. Generally this is not good as I tend to think most negatively then. I am surprisingly not as depressed as I thought I'd be but this is definitely a challenge. I really want this experience to be over! I keep promising myself that the second half will be much better. At least no nausea.
Naomi is on her way to Detroit to play Detroit Community. The criteria to get into that school: must be able to play bball at a high level! If it weren't for this, I'd go watch and then stop in Ferndale for pho at the Flytrap. Their pho is so good!
So it is now sunny though probably very cold. Maybe if I could walk without feeling faint, I'll go out. Running is out of the question. It is Jan's birthday today but I don't know what I could do to celebrate it. Deb will come over later with soup. Hopefully the queasiness will be gone then.
Friday, January 2, 2009
I feel sh*tty, very sh*tty...
Sung to the tune of "I Feel Pretty" from West Side Story. Another song from the West Side Story collection. "Ur-re-a, ur-re-a, I just made a thio-u-re-a" sung to the tune of Maria. We'd sing these silly songs back in the lab. As for ureas, I see by googling myself the patent for them finally came through. It seems that I wasn't going to find out any other way.
But I guess the third day out is when my queasiness peaks. Have to keep repeating "This too shall pass". If it gets worse, I'll take a Zofran.
So it is cold outside. I haven't left the house since my infusion day. Fortunately I have had visitors to keep me entertained. Yesterday Josh and later one of the moms. We watched "Rendition". Very scary that situations like that can happen.
A few weeks ago, I had lunch with Shanna's Syrian mother-in-law. She had read somewhere that asparagus was the "American's favorite vegetable" and made the main dish with it to appease my "American " tastes. Sadly asparagus makes me gag even when I am not in chemoland.
Coffee again, is out. Bland food OK. Got to keep my fruit and vegetable intake up. I have a long, long time left here in chemoland but hopefully the Taxol half will be better.
But I guess the third day out is when my queasiness peaks. Have to keep repeating "This too shall pass". If it gets worse, I'll take a Zofran.
So it is cold outside. I haven't left the house since my infusion day. Fortunately I have had visitors to keep me entertained. Yesterday Josh and later one of the moms. We watched "Rendition". Very scary that situations like that can happen.
A few weeks ago, I had lunch with Shanna's Syrian mother-in-law. She had read somewhere that asparagus was the "American's favorite vegetable" and made the main dish with it to appease my "American " tastes. Sadly asparagus makes me gag even when I am not in chemoland.
Coffee again, is out. Bland food OK. Got to keep my fruit and vegetable intake up. I have a long, long time left here in chemoland but hopefully the Taxol half will be better.
Thursday, January 1, 2009
Happy New Year!
What I want most of course for the New Year is for this sad chapter in my life to be over. Day 31 in chemoland. I feel much more queasy today than yesterday. Actually I didn't feel any queasiness at all until the afternoon. I took the wrong Emend tablet yesterday. They come in a 3 pack ($500 per pack). The big one is supposed to be taken an hour before infusion and the smaller two over the next 2 days. But I was thrown off by not having the big one in my hands before the first infusion (noone told me). The hospital gave (sold) me a big one and told me to fill the prescription later in the day and always reserve the big one for the next infusion. Well I was good about that until yesterday when I blindly gobbled up the big one. I can save the little one for the next infusion or get another 3 pack. Allegedly I won't need Emend at all for the Taxol phase.
I thoroughly read the Emend brochure. Seems to be a clean drug (not much side effects-only blocks Substance P that is responsible for initiating vomiting). I also look at the structure to see if I could have possibly made it. I see a few steps that would make the synthesis a bitch. Still not clear if it is more effective if taken with the nasty steroids or not.
It was also the day for Steve to give me a shot of Neulasta. Not fun and it seemed to hurt more this time. I am grateful that I don't have the bone pain that many get because of it. Plus it seems to be working. Steve had to make numerous phone calls to get the first two doses approved. Apparently we were to have arranged this weeks in advance. The local pharmacy sold the first two doses for $8000. The second two doses, which we ordered the 'right way' came shipped in ice complete with a sharps container last Saturday with a pricetag of $12,000. This should last through my Red Devil phase but I will need some for the Taxol phase too. We will have a completely different insurance plan then-costs much more for much less benefits. But I guess we should be lucky that we get any insurance at all given that we are 'unemployed'. Every day new bills come in the mail. Fortunately very little co-pays and the few times that things weren't covered, they became covered when Steve complained.
One mom came to visit during the day, which was very much appreciated. Two other friends came over at night for our New Year's Celebration bringing lots of goodies that I would have snarfed down in a second had I been less queasy. We watched Little Rascal's episodes from my friend's collection until close to midnight. I had nodded off as I had gotten up very early that day to deal with Spud. But it was nice and I am very, very grateful for my good friends. Naomi spent the first half of the evening at a basketball team sleepover but insisted that she be picked up and delivered to her one friend who is only here during holidays and would have spent the night alone otherwise.
I am picking up new countries in my readership. Today Turkey and Germany. Yesterday Hong Kong.
Wishing all my cancer warriors out there in Cancerland the best this year, which would be a perpetual NED (no evidence of disease)!
I thoroughly read the Emend brochure. Seems to be a clean drug (not much side effects-only blocks Substance P that is responsible for initiating vomiting). I also look at the structure to see if I could have possibly made it. I see a few steps that would make the synthesis a bitch. Still not clear if it is more effective if taken with the nasty steroids or not.
It was also the day for Steve to give me a shot of Neulasta. Not fun and it seemed to hurt more this time. I am grateful that I don't have the bone pain that many get because of it. Plus it seems to be working. Steve had to make numerous phone calls to get the first two doses approved. Apparently we were to have arranged this weeks in advance. The local pharmacy sold the first two doses for $8000. The second two doses, which we ordered the 'right way' came shipped in ice complete with a sharps container last Saturday with a pricetag of $12,000. This should last through my Red Devil phase but I will need some for the Taxol phase too. We will have a completely different insurance plan then-costs much more for much less benefits. But I guess we should be lucky that we get any insurance at all given that we are 'unemployed'. Every day new bills come in the mail. Fortunately very little co-pays and the few times that things weren't covered, they became covered when Steve complained.
One mom came to visit during the day, which was very much appreciated. Two other friends came over at night for our New Year's Celebration bringing lots of goodies that I would have snarfed down in a second had I been less queasy. We watched Little Rascal's episodes from my friend's collection until close to midnight. I had nodded off as I had gotten up very early that day to deal with Spud. But it was nice and I am very, very grateful for my good friends. Naomi spent the first half of the evening at a basketball team sleepover but insisted that she be picked up and delivered to her one friend who is only here during holidays and would have spent the night alone otherwise.
I am picking up new countries in my readership. Today Turkey and Germany. Yesterday Hong Kong.
Wishing all my cancer warriors out there in Cancerland the best this year, which would be a perpetual NED (no evidence of disease)!
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