Today the waterproof covers/pants I ordered arrived. (I got the white Bummis Super Whisper Wrap.) They are designed for use with cloth diapers, so they are soft and comfy. To celebrate the occasion, when I went to the organic food store, I left Captain Adorable in his training pants and just put the cover on over them. When we got home, over an hour later, he was still dry. It was a very small achievement, but I am proud of him. We may in fact be done with diapers, except for when sleeping.
This does not mean that we are done with accidents. :) Accidents are still going to happen; this is a two-steps-forward-one-step-back type process and I am fully prepared to continue to have 2-4 wet pairs of training pants per day for a few weeks. Some days there are less and some days there are more accidents. I am fully confident that Captain Adorable will stay dry all day at some point in the next few months.
Now all we need is to learn to poop in the potty...sigh.
Sunday, July 13, 2008
Saturday, July 12, 2008
Could Be A Coincidence But...
I started using Tortuga Lotion made by Keys Soap on my face yesterday and this morning I woke up to almost completely clear skin!!!! The rash was clearing up, and I have been super careful about staying out of the sun, so it could be coincidence, but I just thought I'd put this development on the blog so if there are other people out there suffering from Tarceva skin rash maybe this will help them too. These products were designed and made by a woman who had skin cancer, so they are really good quality and made for hypersensitive skin.
The insect repellent I mentioned in yesterday's post is made by the same company. (Though it seems not to be marketted as an insect repellent first and foremost...we will see how it works.)
The insect repellent I mentioned in yesterday's post is made by the same company. (Though it seems not to be marketted as an insect repellent first and foremost...we will see how it works.)
Friday, July 11, 2008
A Little Cancer and A Lot of Motherhood
Well, am not going to talk about the state of my rash anymore because I think it is always going to be in some stage of worse or better as long as I am on Tarceva. At the moment it is getting better again and that is good. The hat is on my head every time I set foot outside and sunscreen if I am outside in the sun for more than 5-10 minutes. If I am going to sit in the shadow of the deck in our backyard, I do wear the hat but not sunscreen.
I took Captain Adorable to the pediatrician today (for his 18 month well baby visit). Yes, I like visiting the pediatrician. Ours is crunchy (never have to worry about her retracting his foreskin or something equally horrid) and she is nice. Today she was wearing lovely black and pink floral print dress, so she looks like a person, not a doctor, if you know what I mean. She is sweet to Captain Adorable and if he does not want her to poke him in a certain place (did not want to let her look in his mouth), she does not push it. She always takes a long time with us, and interacts with us in a friendly, unhurried way. She always asks me how I am doing and today she brought down a few creams from her own personal collection (her practice is in her house) for me to test on my face. She told me that it would be good to use a cream that is designed to help the skin heal instead of Eucerin (which I use now) which prevents it from getting worse but does not nourish. I do not know if the beautiful cream I bought will really help the rash, but it certainly feels good and smells good. We will see if it is worth the 20+ bucks I paid for it...she also recommended a super super excellent insect repellent that is designed for people with very sensitive skin (like toddlers/babies). Captain Adorable got a little dermatitis from the insect repellent I was using when at my parents' house. It uses something called "neem" which is supposed to work just as well as DEET but is safe enough to drink. I will have to google it and post a link for others who may be interested...
Anyhow, Captain Adorable gained a pound since his last visit 3 months ago (thank goodness) so that helps me to feel confident about what and how much he is eating. Some days he eats more, some days he eats less. As long as I keep feeding him good quality/organic whole foods (with some treats thrown in here and there) I think he will be fine. His head circumference increased as well, but the best thing is, he grew 3 inches since last visit! The pediatrician was so surprised by this that she measured him twice just to make sure.
So, here are his stats:
Weight: 23 pounds 12 ounces (20th percentile)
Height: 33.5 inches (80th percentile)
Head circumference: 48.5 cm (75th percentile)
All in all I was quite satisfied by these measurements and left feeling very happy. I just made a smoothie for my little Captain which consists of organic whole fat vanilla yogurt (brand: Brown Cow) and organic strawberries. He is downing it. OK, it does have sugar in it because there is sugar in the vanilla yogurt, but because that sugar is in the form of maple syrup and evaporated cane juice, I am not too worried. Excellent vehicle for him to get fat, protein, and fruit.
In potty learning news, there was a big set back when we came home from my parents' house. He was naked most of the time while we were there (they live in the middle of no where) and perhaps the ability to pee wherever he felt the urge is what did it? I don't know...but for all of this week (we returned home on Monday and it is now Friday) he has been having what is called a "potty pause." It is as if he has never learned to use the potty at all! Worse, one day (Wednesday, I think) he even peed on me as he stood in my lap! Yesterday he pointed out his pee on the floor to me ("Pee!" with index finger extended while standing with his legs apart because his underpants were wet). That did try my bland-faced patience a bit. Of course I did not get angry with him, but most likely I did sigh loudly more than once...
SIDE NOTE:
In case you are thinking of starting potty learning or potty training or whatever you want to call it with your child, no matter the age, keep in mind that all the "experts," whether they advocate "readiness" a la T. Berry Brazelton or an approach closer to the ideas behind Elimination Communication (which is what we are doing), everyone says that there is nothing to be gained from punishment. If you create fear and apprehension around toileting, it will be much more difficult for your child to learn! Praise is always good of course.
Thank goodness, today we seem to be back in the groove. Aside from the one poop accident, he's been wearing the same pair of underpants all day (in our house, not on outings). Of course there is still the problem of pooping; Captain Adorable does not poop on the potty. Today, however, for the Very First Time Ever, he told me he was pooping. I find this very encouraging and I hope it will lead to further warnings and maybe even pooping on the potty!!! I finally ordered some plastic pants, so very soon Captain Adorable will be in underpants 100% of the time. I imagine I will have to buy a bigger bag since I will probably be carrying around a potty seat. Sigh. (But that's ok!)
Every morning for breakfast Capt. Adorable eats a scrambled egg. He eats it with a fork and also with his hands (fork in the right hand, picks up pieces with his left). This morning I thought I'd give him a little treat and made him a one-egg omelet. The only thing I added was cheddar cheese. Everything else was exactly the same. However, when I offered the omelet, his reaction was anger. He would not eat! The one bit I managed to get in his mouth he spat out immediately. Then I remembered that he also rejected the french toast I made for him earlier this week. I guess he is really into his routine. Once I finally understood this, I made him a scrambled egg and he yummed it up. Later he asked for cereal (I cannot eat until one hour after I take my Tarceva, so I eat breakfast well after Captain Adorable does) and even though I had already eaten his omelet, I figured that I'd give him a little bowl. I put it (grapenuts) in a ramkin with milk and prepared to feed it to him with a little spoon. He became very angry and cried and yelled and refused to allow the spoon to touch his lips. I gave up quickly but he continued to be angry and ask for cereal. Finally realization hit me and I took him and the cereal out on the deck. There we sat at the table and Captain Adorable happily spilled cereal and milk all over the place while putting bites in his mouth by himself. Perhaps by the end of the summer he will be feeding himself all the time.
While I was in Tennessee visiting my parents I talked a bit with a man who has throat cancer (not sure of which type or stage). He had radiation and chemo. He told me about it while puffing on his cigarette. When that one was done, he lit another. I was a bit shocked and disgusted. Which makes me question some assumptions I have. It sort of annoys me when people ask me if I smoked once they find out I have lung cancer. I feel like answering, "if I did does that mean I deserve it?" but I never do. And yet, here I was, judging that man for smoking, thinking what a waste of money and time his treatment was. Not very compassionate of me. Obviously I too am governed by prejudices of all kinds. Have to try to be gentler with people who ask about the causes of my cancer in the future.
I took Captain Adorable to the pediatrician today (for his 18 month well baby visit). Yes, I like visiting the pediatrician. Ours is crunchy (never have to worry about her retracting his foreskin or something equally horrid) and she is nice. Today she was wearing lovely black and pink floral print dress, so she looks like a person, not a doctor, if you know what I mean. She is sweet to Captain Adorable and if he does not want her to poke him in a certain place (did not want to let her look in his mouth), she does not push it. She always takes a long time with us, and interacts with us in a friendly, unhurried way. She always asks me how I am doing and today she brought down a few creams from her own personal collection (her practice is in her house) for me to test on my face. She told me that it would be good to use a cream that is designed to help the skin heal instead of Eucerin (which I use now) which prevents it from getting worse but does not nourish. I do not know if the beautiful cream I bought will really help the rash, but it certainly feels good and smells good. We will see if it is worth the 20+ bucks I paid for it...she also recommended a super super excellent insect repellent that is designed for people with very sensitive skin (like toddlers/babies). Captain Adorable got a little dermatitis from the insect repellent I was using when at my parents' house. It uses something called "neem" which is supposed to work just as well as DEET but is safe enough to drink. I will have to google it and post a link for others who may be interested...
Anyhow, Captain Adorable gained a pound since his last visit 3 months ago (thank goodness) so that helps me to feel confident about what and how much he is eating. Some days he eats more, some days he eats less. As long as I keep feeding him good quality/organic whole foods (with some treats thrown in here and there) I think he will be fine. His head circumference increased as well, but the best thing is, he grew 3 inches since last visit! The pediatrician was so surprised by this that she measured him twice just to make sure.
So, here are his stats:
Weight: 23 pounds 12 ounces (20th percentile)
Height: 33.5 inches (80th percentile)
Head circumference: 48.5 cm (75th percentile)
All in all I was quite satisfied by these measurements and left feeling very happy. I just made a smoothie for my little Captain which consists of organic whole fat vanilla yogurt (brand: Brown Cow) and organic strawberries. He is downing it. OK, it does have sugar in it because there is sugar in the vanilla yogurt, but because that sugar is in the form of maple syrup and evaporated cane juice, I am not too worried. Excellent vehicle for him to get fat, protein, and fruit.
In potty learning news, there was a big set back when we came home from my parents' house. He was naked most of the time while we were there (they live in the middle of no where) and perhaps the ability to pee wherever he felt the urge is what did it? I don't know...but for all of this week (we returned home on Monday and it is now Friday) he has been having what is called a "potty pause." It is as if he has never learned to use the potty at all! Worse, one day (Wednesday, I think) he even peed on me as he stood in my lap! Yesterday he pointed out his pee on the floor to me ("Pee!" with index finger extended while standing with his legs apart because his underpants were wet). That did try my bland-faced patience a bit. Of course I did not get angry with him, but most likely I did sigh loudly more than once...
SIDE NOTE:
In case you are thinking of starting potty learning or potty training or whatever you want to call it with your child, no matter the age, keep in mind that all the "experts," whether they advocate "readiness" a la T. Berry Brazelton or an approach closer to the ideas behind Elimination Communication (which is what we are doing), everyone says that there is nothing to be gained from punishment. If you create fear and apprehension around toileting, it will be much more difficult for your child to learn! Praise is always good of course.
Thank goodness, today we seem to be back in the groove. Aside from the one poop accident, he's been wearing the same pair of underpants all day (in our house, not on outings). Of course there is still the problem of pooping; Captain Adorable does not poop on the potty. Today, however, for the Very First Time Ever, he told me he was pooping. I find this very encouraging and I hope it will lead to further warnings and maybe even pooping on the potty!!! I finally ordered some plastic pants, so very soon Captain Adorable will be in underpants 100% of the time. I imagine I will have to buy a bigger bag since I will probably be carrying around a potty seat. Sigh. (But that's ok!)
Every morning for breakfast Capt. Adorable eats a scrambled egg. He eats it with a fork and also with his hands (fork in the right hand, picks up pieces with his left). This morning I thought I'd give him a little treat and made him a one-egg omelet. The only thing I added was cheddar cheese. Everything else was exactly the same. However, when I offered the omelet, his reaction was anger. He would not eat! The one bit I managed to get in his mouth he spat out immediately. Then I remembered that he also rejected the french toast I made for him earlier this week. I guess he is really into his routine. Once I finally understood this, I made him a scrambled egg and he yummed it up. Later he asked for cereal (I cannot eat until one hour after I take my Tarceva, so I eat breakfast well after Captain Adorable does) and even though I had already eaten his omelet, I figured that I'd give him a little bowl. I put it (grapenuts) in a ramkin with milk and prepared to feed it to him with a little spoon. He became very angry and cried and yelled and refused to allow the spoon to touch his lips. I gave up quickly but he continued to be angry and ask for cereal. Finally realization hit me and I took him and the cereal out on the deck. There we sat at the table and Captain Adorable happily spilled cereal and milk all over the place while putting bites in his mouth by himself. Perhaps by the end of the summer he will be feeding himself all the time.
While I was in Tennessee visiting my parents I talked a bit with a man who has throat cancer (not sure of which type or stage). He had radiation and chemo. He told me about it while puffing on his cigarette. When that one was done, he lit another. I was a bit shocked and disgusted. Which makes me question some assumptions I have. It sort of annoys me when people ask me if I smoked once they find out I have lung cancer. I feel like answering, "if I did does that mean I deserve it?" but I never do. And yet, here I was, judging that man for smoking, thinking what a waste of money and time his treatment was. Not very compassionate of me. Obviously I too am governed by prejudices of all kinds. Have to try to be gentler with people who ask about the causes of my cancer in the future.
Tuesday, July 8, 2008
Rash Worse Again
Sigh. Just when it was almost all cleared up, I am covered in pimples all over my face Yes, even my eyelids. My neck is bad enough that I had to apply hydrocortizone cream (which burns burns burns for a few minutes until it calms down and the itch is soothed). I have big red pimples on my décolletage, too. I wonder if this is because I did not apply sunscreen to my sensitive areas (face and neck) and went to play in the water while visiting my parents. I was told that sun would make the rash worse...here I am, 2 days later and it is indeed worse. I wore a hat. I even wore the BIG hat. I just couldn't swim with Captain Adorable and wear the hat, so I took it off. I put it right back on again when I was not in the water. Or did I? Did I protect my face enough? Obviously not. Sigh.
In other news, I have been having diarrhea more often for the last few days. However, today it is getting bad.
Every day with cancer comes with a price. Sometimes it is a small price (wear a hat, put up with this rash) and sometimes it is a big price (thoracic surgery), and sometimes it is a price so big that for the rest of my life I will mourn it (losing my nursing relationship with my darling, darling little boy). All the prices, big and small, they all accumulate in my mind and on my heart. Sometimes I cry for myself and for my Captains and my parents and the other people I love. I think that is understandable.
Now for a bit of motherhood news. Today was Captain Adorable's first swimming lesson. He has been in the water (swimming) plenty of times. He's been in pools, a couple of hot tubs, a pond, and the ocean. This morning, however, he got to walk around in the shallow water of an indoor pool with only 3 other children (who were also being shadowed by their mommies). The class instructor had toys that floated and toys that sank for the kids to play with and Captain Adorable enjoyed carrying those around and giving them to people. He loves giving stuff to people. :) Next lesson is on Thursday morning. It brings me joy to see him so beautiful and happy, exploring the water, his body, interacting with other people. Love love love.
In other news, I have been having diarrhea more often for the last few days. However, today it is getting bad.
Every day with cancer comes with a price. Sometimes it is a small price (wear a hat, put up with this rash) and sometimes it is a big price (thoracic surgery), and sometimes it is a price so big that for the rest of my life I will mourn it (losing my nursing relationship with my darling, darling little boy). All the prices, big and small, they all accumulate in my mind and on my heart. Sometimes I cry for myself and for my Captains and my parents and the other people I love. I think that is understandable.
Now for a bit of motherhood news. Today was Captain Adorable's first swimming lesson. He has been in the water (swimming) plenty of times. He's been in pools, a couple of hot tubs, a pond, and the ocean. This morning, however, he got to walk around in the shallow water of an indoor pool with only 3 other children (who were also being shadowed by their mommies). The class instructor had toys that floated and toys that sank for the kids to play with and Captain Adorable enjoyed carrying those around and giving them to people. He loves giving stuff to people. :) Next lesson is on Thursday morning. It brings me joy to see him so beautiful and happy, exploring the water, his body, interacting with other people. Love love love.
Saturday, July 5, 2008
Rash Much Improved
Well I am happy to report that my rash is much improved. Yes, my skin is still very dry and I need to apply oil and lotion a few times (about 3-4) times per day. My eyes still bother me, though not as badly (I have a few episodes of stinging/burning and tearing per day). I am still more sensitive to light and have to wear sunglasses all the time when outside. Of course because my face is all greasy my sunglasses get all greasy and much of the time I can't tell if my vision is blurry because of Tarceva or because of lotion on my sunglasses! :) It is true that I have a lot of pimples and I think my face looks terrible, but I've never had pimples, not even as a teenager, so any pimples at all seem like a terrible blight upon my face to me. Of course, perhaps what looks very bad to me is also partially hidden by my freckles.
The Captains and I are in Tennessee at my parents house and it is wonderful. Captain Adorable gets to have four devotees instead of only two and his parents get to play on their computers while the grandparents live it up hanging out with the baby (I call him that sometimes though he really is not a baby anymore).
Last night Captain Obvious set off a bunch of fireworks. It was very nice and Captain Adorable had fun watching from his relaxed, safe, warm spot in my arms. Last year he fell asleep during the fireworks in our town (or course he was nursing then) and this year he came very very close to sleep (it was significantly past his bedtime! bad parents!) but did not fall asleep. I think we will have another fireworks show tonight. More "boom boom" fun for both Captains!
The Captains and I are in Tennessee at my parents house and it is wonderful. Captain Adorable gets to have four devotees instead of only two and his parents get to play on their computers while the grandparents live it up hanging out with the baby (I call him that sometimes though he really is not a baby anymore).
Last night Captain Obvious set off a bunch of fireworks. It was very nice and Captain Adorable had fun watching from his relaxed, safe, warm spot in my arms. Last year he fell asleep during the fireworks in our town (or course he was nursing then) and this year he came very very close to sleep (it was significantly past his bedtime! bad parents!) but did not fall asleep. I think we will have another fireworks show tonight. More "boom boom" fun for both Captains!
Tuesday, July 1, 2008
Email from Radiologist
Well, I guess I was wrong and the news from the radiologist was not bad after all. Check out the email I received from him. :)
My neck/face are still unhappy. I had Captain Obvious take photos of my rash. I will post them soon. I want him to take photos of me in the hats also. :)
from Radiologist
to Rose
date Tue, Jul 1, 2008 at 8:41 AM
subject Re: albation not successful?
Rose,
By in large, I am pretty happy with the ablation of the left upper lobe lesion. Definitive assessment somewhat relies on further imaging to see this lesion change over time, since this lesion was not PET positve before ( so PET negative lesion is not conclusive). The questions remain to be answered is what to do about the other lesion on the other side, and what this ablated lesion will do over time. Another ablation would only indicated if some cancer cells survive through the heat in the left upper lobe, or Dr Brahmer thinks that ablation would be prudent for the remaining right side lesion. Indeed, there was not as much scarring as I may have expected yet, but at 4 weeks it is early days still and does not mean 'it' did not work at all. It is probably related to the burn technique used because the lesion lies right next to nerves to your left arm, the Brachial plexus and need to protect it. The next scans will be more illuminating. Hope that makes it clearer. I am happy so far, particularly how well you have done.
Regards
Radiologist
My neck/face are still unhappy. I had Captain Obvious take photos of my rash. I will post them soon. I want him to take photos of me in the hats also. :)
Quitting the Gym
Well, Captain Obvious has pointed out that because I do not go to the gym anymore that I should cancel the membership within the 30 period which allows us to get all of our money back. I don't want to cancel the gym. But it is true that I am not going to go as long as my face is like this. Plus I am tired all the time and do not feel like going anywhere. Plus Captain Adorable was not doing well with being left at the gym child care...it really seems like it is probably just a waste at this point.
But oh, I am sad about this.
But oh, I am sad about this.
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