No one had to bribe me to get me out of bed today. Last Thursday, the promise of Japanese food was the incentive that made me crawl out of bed!
I was fortunate to get the good nurse Maria again today and she got the needle in on the first try again. We are still having to use a 1 1/2-inch needle instead of the normal inch needle. There was no pain ... just the pressure of the needle going in and that was all. My neurophils are up to 1.0 from .8 last week. It's still below the 1.5 that they would like to see.
My premeds was still Tylenol and Benadryle and that damn Benadryle made me sleepy again. The Herceptin infusion itself only took 30 minutes but the entire process took 2 1/2 hours. The big one is coming next week.
We talked about hair loss and Maria said it's usually between day 10 - 14 after the first infusion. I am on Day 14. I haven't lost my hair yet but I know that is coming. I wore my wig to work on Monday ... it felt like having a hat on my head. Adjusted it a couple of times during the day but for the most part it was fine. It was after I came home and took it off that I had this pain across the top of my forehead for about an hour or so. Overall not too bad.
Maria remarked about my good attitude and I don't know what to say about it. I don't know how else to be ... I have this disease and I have to deal with it. To me it's really quite simple ... I don't want it but I have it. Crying and brooding about it, changes nothing. I don't think it's my "good" attitude ... it's my practical attitude.
Well, me and my good attitude are going upstairs and getting on the elliptical for as long as my legs will allow.
Thursday, April 28, 2011
Wednesday, April 27, 2011
12th Day after the Big Chemo
I'm feeling pretty good this week. I'm eating well, although some foods still taste horrible and water tastes like sludge but I've found that if you flavor it with slices of lemon, orange and cucumber, I can actually drink it again! I'm exercising at the same resistance level but doing 20 minutes instead of 45, but you know what, I am moving and doing the best I can. Yesterday I managed 20 minutes on the elliptical and 10 minutes of yoga. By the end of the night I was moving like a drunken sailor ... I meant to go one way but my body kept going another. But I went to bed early and slept like a blooming log till this morning.
This is a week that has surprised me and given me hope that I can do this ... I can go through this horrible treatment and not lose my mind. Some days will be hell but as long as I know they will end, I can do this.
It was hard not to go to church on Easter Sunday and I can't even remember the last time I missed service, but I have to stay away from crowds ... what is the term the medical folks are using? "Restrict my activities" ... that is what I am doing. I guess it does make sense .. catching anything would just about kill me with my white blood count being so low. I have read about people wishing for death at times like that. It's bad enough that I have to sit at the reference desk and be exposed to whatever someone is carrying but what choice do I have? This is my job.
People have surprised me this week too ... someone I work with went to Chimayo, New Mexico, and brought me back some healing sands. I was deeply touched and my Catholic soul lit up at that ... I am carrying that tin with me until the doctors tell me that I have my 21 years. Isn't that crazy? I do want those 21 years ... I want to see my child graduate, find her first job, plan her wedding, give birth to her children ... I want to look into those faces and see their mother ... I want the joy of loving them and knowing that life goes on.
Another person dropped off a little note that said "Finding the purpose in pain is the hardest part" and that is so true. In the last four months I have said this to John so many times, I am sure the man sometimes wants to gag me ... "What am I supposed to learn from this?" "What good is supposed to come from this?" I still don't know ...
I do know I have a wonderful band of soul sisters, a wonderful family whom I love beyond all measure, and friends who are the best! I am sending virtual hugs to everyone ... I hope to see you all again in August when this treatment is over.
This is a week that has surprised me and given me hope that I can do this ... I can go through this horrible treatment and not lose my mind. Some days will be hell but as long as I know they will end, I can do this.
It was hard not to go to church on Easter Sunday and I can't even remember the last time I missed service, but I have to stay away from crowds ... what is the term the medical folks are using? "Restrict my activities" ... that is what I am doing. I guess it does make sense .. catching anything would just about kill me with my white blood count being so low. I have read about people wishing for death at times like that. It's bad enough that I have to sit at the reference desk and be exposed to whatever someone is carrying but what choice do I have? This is my job.
People have surprised me this week too ... someone I work with went to Chimayo, New Mexico, and brought me back some healing sands. I was deeply touched and my Catholic soul lit up at that ... I am carrying that tin with me until the doctors tell me that I have my 21 years. Isn't that crazy? I do want those 21 years ... I want to see my child graduate, find her first job, plan her wedding, give birth to her children ... I want to look into those faces and see their mother ... I want the joy of loving them and knowing that life goes on.
Another person dropped off a little note that said "Finding the purpose in pain is the hardest part" and that is so true. In the last four months I have said this to John so many times, I am sure the man sometimes wants to gag me ... "What am I supposed to learn from this?" "What good is supposed to come from this?" I still don't know ...
I do know I have a wonderful band of soul sisters, a wonderful family whom I love beyond all measure, and friends who are the best! I am sending virtual hugs to everyone ... I hope to see you all again in August when this treatment is over.
Thursday, April 21, 2011
A Good Herceptin Infusion
At 8:45 am, we presented ourselves at the Infusion Center for my 9 am appointment and was told that my appointment wasn't until 11:15 am! And I thought, "here we go again" ... but I showed the receptionist my appointment schedule and sure enough, it said 9 am.
Thank goodness, they were able to fit me in with wonderful nurse Maria, who needed only one shot to get the needle into the port and I didn't even feel the pinch ... love that woman! While waiting for results of my WBC to come back, the snack cart came around ... you can even get a non-alcoholic martini! Boring old me ... I got the apple juice and Ritz bits cheese crackers.
There was an anxious moment when the lab results came back and my Absolute Neutrophils came back at 0.8 ... the lowest range for normal is 1.5, so we had to wait for clearance from the oncologist's office to give me the infusion. Thank goodness we got it ... I didn't want to have to come back.
My premeds for this were Tylenol and Benadryle ... and I got sleepy ... dozed off a couple of times! Hoping I would be wide awake through this one, but no such luck.
And as promised, I got my Japanese lunch after the infusion. We stopped by the house to pick Sarah up and then we went to Osaka for my bento box. I need protein, so I ordered the sesame chicken, and it was too much to finish ... I'm having it for dinner too. Yum, yum.
Good experience today!
Thank goodness, they were able to fit me in with wonderful nurse Maria, who needed only one shot to get the needle into the port and I didn't even feel the pinch ... love that woman! While waiting for results of my WBC to come back, the snack cart came around ... you can even get a non-alcoholic martini! Boring old me ... I got the apple juice and Ritz bits cheese crackers.
There was an anxious moment when the lab results came back and my Absolute Neutrophils came back at 0.8 ... the lowest range for normal is 1.5, so we had to wait for clearance from the oncologist's office to give me the infusion. Thank goodness we got it ... I didn't want to have to come back.
My premeds for this were Tylenol and Benadryle ... and I got sleepy ... dozed off a couple of times! Hoping I would be wide awake through this one, but no such luck.
And as promised, I got my Japanese lunch after the infusion. We stopped by the house to pick Sarah up and then we went to Osaka for my bento box. I need protein, so I ordered the sesame chicken, and it was too much to finish ... I'm having it for dinner too. Yum, yum.
Good experience today!
Wednesday, April 20, 2011
A Mixed Bag
It's hard to believe that a week has gone by and tomorrow I will be at the infusion center for my Herceptin. I am not looking forward to that.
I am however, grateful for the week I have had. Friday following the TCH infusion was almost normal except for the swelling and the discomfort at the port site. I ate normally but in hindsight probably shouldn't have. I noticed a feeling of nausea building up and the slow disintegration of my taste buds until even water tasted slimy.
Saturday morning was perhaps my worst period but who can say whether it was the damn chemo or the Dulcolax going through my system. But there were certainly moments when I almost wished for death (I know, I know ... wimpy). But even in moments like these God sends you little signs to comfort you. Mine was Cloudy and Tiger sitting together by the bathroom door keeping an eye on me, and at that moment if either one had asked for the moon, I would have crawled to get it for them!
Saturday was needless to say, shot to hell for me. I took a shower and stayed in my oldest, most comfortable flannel pajamas, sipping on ginger tea while curled up in the armchair. Amy made me chicken ginger soup and I was able to eat some of that. But the problem is I have now developed an aversion to ginger. I should have listened to those people who said to not eat your favorite foods within three days of getting chemo.
On Sunday everything still tastes like rubbish but there are a few things like the cran-pomegranate juice that still tastes pretty good ... crunchy green beans sauteed with just oil and minced garlic tasted mighty fine. So there is hope that I will find some foods to eat that will sustain me. I have developed the weirdest cravings for food that I have not had in almost 30 years -- Mum's fried rice with Chinese sausage; soy sauce chicken with rice and roasted peanuts (note to self ... put peanuts on shopping list). I have lost seven pounds in a week. But now that I have figured out that I have to just try eating some of the foods that I crave, I will not starve to death.
I have developed a powerful hankering for Japanese food ... maybe if we get out of the infusion center at lunch time, hubby will take me to Osaka tomorrow ... bento box here I come!
The tiredness I can do nothing about, but I just have to listen to my body and not push beyond what it can do. On Monday I stayed at work until 1 pm ... until it became clear that I could not go beyond that without falling asleep at the desk or putting everyone's life in danger as I drove home. Yesterday, I stayed until 2 pm and today I will stay until 3 pm or 4 pm. It's just so strange to wake up feeling so well and then to feel oneself fading an hour later ... I guess as John says this is my new normal.
The constant feeling of being off balance is a nuisance but I can shuffle like an old lady for 18 weeks ... let the students think the librarian is drunk!
Oh, I miss my water but I cannot drink it. Thank goodness for ice cold lemon tea!
I am however, grateful for the week I have had. Friday following the TCH infusion was almost normal except for the swelling and the discomfort at the port site. I ate normally but in hindsight probably shouldn't have. I noticed a feeling of nausea building up and the slow disintegration of my taste buds until even water tasted slimy.
Saturday morning was perhaps my worst period but who can say whether it was the damn chemo or the Dulcolax going through my system. But there were certainly moments when I almost wished for death (I know, I know ... wimpy). But even in moments like these God sends you little signs to comfort you. Mine was Cloudy and Tiger sitting together by the bathroom door keeping an eye on me, and at that moment if either one had asked for the moon, I would have crawled to get it for them!
Saturday was needless to say, shot to hell for me. I took a shower and stayed in my oldest, most comfortable flannel pajamas, sipping on ginger tea while curled up in the armchair. Amy made me chicken ginger soup and I was able to eat some of that. But the problem is I have now developed an aversion to ginger. I should have listened to those people who said to not eat your favorite foods within three days of getting chemo.
On Sunday everything still tastes like rubbish but there are a few things like the cran-pomegranate juice that still tastes pretty good ... crunchy green beans sauteed with just oil and minced garlic tasted mighty fine. So there is hope that I will find some foods to eat that will sustain me. I have developed the weirdest cravings for food that I have not had in almost 30 years -- Mum's fried rice with Chinese sausage; soy sauce chicken with rice and roasted peanuts (note to self ... put peanuts on shopping list). I have lost seven pounds in a week. But now that I have figured out that I have to just try eating some of the foods that I crave, I will not starve to death.
I have developed a powerful hankering for Japanese food ... maybe if we get out of the infusion center at lunch time, hubby will take me to Osaka tomorrow ... bento box here I come!
The tiredness I can do nothing about, but I just have to listen to my body and not push beyond what it can do. On Monday I stayed at work until 1 pm ... until it became clear that I could not go beyond that without falling asleep at the desk or putting everyone's life in danger as I drove home. Yesterday, I stayed until 2 pm and today I will stay until 3 pm or 4 pm. It's just so strange to wake up feeling so well and then to feel oneself fading an hour later ... I guess as John says this is my new normal.
The constant feeling of being off balance is a nuisance but I can shuffle like an old lady for 18 weeks ... let the students think the librarian is drunk!
Oh, I miss my water but I cannot drink it. Thank goodness for ice cold lemon tea!
Friday, April 15, 2011
My Chemo Bag
I have prepared myself a chemo bag to take with me to work. It has the following items:
1. Curel moisturizer
2. Immodium
3. Benadryle
4. Flushable wipes/medicated
5. Desitin
6. Thermometer
7. Toothbrush & toothpaste
8. Biotene mouthwash
9. Ziplock bags
10. Tylenol
11. Aleve
1. Curel moisturizer
2. Immodium
3. Benadryle
4. Flushable wipes/medicated
5. Desitin
6. Thermometer
7. Toothbrush & toothpaste
8. Biotene mouthwash
9. Ziplock bags
10. Tylenol
11. Aleve
Thursday, April 14, 2011
A Hellish Beginning
After 13 hours we are finally home! This was supposed to take only five hours at most but it was eight more hours beyond that before we were done. The horror of the nurses trying to get the needle into the port will be one I won't forget anytime soon.
First the young nurse named Ashley tried to insert the one-inch needle into the port and although it went in, she was not able to get any blood out and had to remove the needle. She then went to get another nurse, an older more experienced nurse who tried another one-inch needle and then an 1 1/2-inch needle. The pressing down on an area that was still not healed and throbbing with pain and the stabbing of the many needles was agony. When she couldn't get anything, she went to get another nurse, Maureen, who also tried, and by this time I was in so much pain, that the name of the almighty was mentioned! And if you know me, once I reach this point, I am in real bad shape! Tears popped out too and I felt like a big baby.
After four attempts they finally gave up and called Dr. Schaffer's office who told them that they wanted me taken to the Angio department where the needle would be inserted with the help of x-ray.
And while we were waiting, a little nun came to pray with me and give me communion. I loved it and it calmed me down! It reminded me that God is always with me and that he will help me bear everything I have to.
When we got to Angio, I had to wait for the doctor for quite a while. The nurse, Michelle, took one look at the swollen port area, and said she wasn't going to touch it and went in search of a doctor. When the doctor finally became available, he too had to make two attempts. First he used the one-inch needle ... seriously people? Haven't we been down this road before? At least he discovered that there was a hematoma between my skin and the port and he drained that. On his second attempt with a 1 1/2-inch needle he finally got it in and was able to draw blood. And don't think it was any easier ... although he was more skillful ... it was still painful and there were several "Oh Gods". But it was done!
Got back up to my room 603 and there was "wonderful" hospital lunch. Ok ... I lie ... it wasn't bad. I was so hungry because all I had had was a piece of toast. There were thin slices of pork with some kind of sauce, mashed potatoes (ate all of this); spinach (ate two forkfuls); roll (pinched it); peach fruit cup (ate two pieces); peanut butter cookie (saved for later since I had my yummy ginger cookies) and water.
When the chemo drugs had not appeared yet by 1:30, I sent John out to get lunch for himself. I offered to share my hospital food, but Arby's won out for him. I read my two cookbooks -- "Eating Well With Cancer" and "Cancer-Fighting Kitchen," planned my menu for the week and did my shopping list.
After 2 pm when I was getting ready to start my book The Postmistress, nurse Ashley comes with my premeds -- Tylenol, Zofran, Zantac (50 mg), Ativan (0.5 mg), Benadryle (25 mg). One of the medications caused the weirdest intense itching ... started in my bottom of all places and then spread to under my arms and my head, but the Benadryle quickly took care of that. Strange! And of course the Benadryle knocked me out. Grrr ... I didn't want to sleep during the day, I'm afraid it is going to affect my sleep tonight.
When it came to the chemo drugs, it started with Herceptin (Trastuzumab) 260 mg, which took 90 minutes; then Docetaxel 124 mg which took 1 hour; and then Carboplatin 600 mg which took another hour. There were many, many trips to the bathroom in between!
And dinner came right after I had eaten my ginger cookie ... I am liking that cookie even better the next day which is common with anything made with spices. Time melds the flavors. I've also been drinking my ginseng ginger tea (more ginger the next time) and water.
I was hungry ... I ate all the chicken, carrots, touched the rice (no one can cook rice properly), ate all the fruit cup; cherry pie (yum); gave John the vanilla ice cream; drank all the water.
Finally all the medications were done and the port flushed! It is just after 9 pm and we are finally home. It's been a long, long day! But I survived this first chemo session and I will survive the next and the one after that and I shall to do them all with grace (thank you Donna for the reminder).
First the young nurse named Ashley tried to insert the one-inch needle into the port and although it went in, she was not able to get any blood out and had to remove the needle. She then went to get another nurse, an older more experienced nurse who tried another one-inch needle and then an 1 1/2-inch needle. The pressing down on an area that was still not healed and throbbing with pain and the stabbing of the many needles was agony. When she couldn't get anything, she went to get another nurse, Maureen, who also tried, and by this time I was in so much pain, that the name of the almighty was mentioned! And if you know me, once I reach this point, I am in real bad shape! Tears popped out too and I felt like a big baby.
After four attempts they finally gave up and called Dr. Schaffer's office who told them that they wanted me taken to the Angio department where the needle would be inserted with the help of x-ray.
And while we were waiting, a little nun came to pray with me and give me communion. I loved it and it calmed me down! It reminded me that God is always with me and that he will help me bear everything I have to.
When we got to Angio, I had to wait for the doctor for quite a while. The nurse, Michelle, took one look at the swollen port area, and said she wasn't going to touch it and went in search of a doctor. When the doctor finally became available, he too had to make two attempts. First he used the one-inch needle ... seriously people? Haven't we been down this road before? At least he discovered that there was a hematoma between my skin and the port and he drained that. On his second attempt with a 1 1/2-inch needle he finally got it in and was able to draw blood. And don't think it was any easier ... although he was more skillful ... it was still painful and there were several "Oh Gods". But it was done!
Got back up to my room 603 and there was "wonderful" hospital lunch. Ok ... I lie ... it wasn't bad. I was so hungry because all I had had was a piece of toast. There were thin slices of pork with some kind of sauce, mashed potatoes (ate all of this); spinach (ate two forkfuls); roll (pinched it); peach fruit cup (ate two pieces); peanut butter cookie (saved for later since I had my yummy ginger cookies) and water.
When the chemo drugs had not appeared yet by 1:30, I sent John out to get lunch for himself. I offered to share my hospital food, but Arby's won out for him. I read my two cookbooks -- "Eating Well With Cancer" and "Cancer-Fighting Kitchen," planned my menu for the week and did my shopping list.
After 2 pm when I was getting ready to start my book The Postmistress, nurse Ashley comes with my premeds -- Tylenol, Zofran, Zantac (50 mg), Ativan (0.5 mg), Benadryle (25 mg). One of the medications caused the weirdest intense itching ... started in my bottom of all places and then spread to under my arms and my head, but the Benadryle quickly took care of that. Strange! And of course the Benadryle knocked me out. Grrr ... I didn't want to sleep during the day, I'm afraid it is going to affect my sleep tonight.
When it came to the chemo drugs, it started with Herceptin (Trastuzumab) 260 mg, which took 90 minutes; then Docetaxel 124 mg which took 1 hour; and then Carboplatin 600 mg which took another hour. There were many, many trips to the bathroom in between!
And dinner came right after I had eaten my ginger cookie ... I am liking that cookie even better the next day which is common with anything made with spices. Time melds the flavors. I've also been drinking my ginseng ginger tea (more ginger the next time) and water.
I was hungry ... I ate all the chicken, carrots, touched the rice (no one can cook rice properly), ate all the fruit cup; cherry pie (yum); gave John the vanilla ice cream; drank all the water.
Finally all the medications were done and the port flushed! It is just after 9 pm and we are finally home. It's been a long, long day! But I survived this first chemo session and I will survive the next and the one after that and I shall to do them all with grace (thank you Donna for the reminder).
Wednesday, April 13, 2011
Ginger for Nausea
I've been drinking ginseng green tea with freshly grated ginger to build up my resistance to nausea, so we shall see if this works. Tonight I decided to bake some ginger cookies. I found a Paula Deen recipe that seemed fine and it was! The cookies are crunchy on the outside and soft inside. I like my cookies more gingery so I doubled the amount of ginger. This is not the gingersnap cookies that my granny liked, but they are mighty good.
3/4 cup shortening
1 cup sugar
1 large egg
1/4 cup molasses
2 cup sifted all-purpose flour
2 tsp. baking soda
1 tsp. ground cinnamon
2 tsp. ground ginger
1/2 tsp. ground cloves
1/2 tsp. salt
1. Cream shortening and sugar until fluffy. Add egg and molasses and beat until well mixed.
2. Sift the flour, baking soda, cinnamon, ginger, cloves and salt. Add to the shortening mixture. Stir until well combined.
3. Use about one teaspoon of dough and roll into balls. Roll the balls in granulated sugar. Place half an inch apart on a baking stone or baking sheet lined with parchment paper. Flatten the balls slightly with your fingertips.
4. Bake in a preheated 350 degree oven for 12 minutes. Cool on wire racks. Store in airtight tins.
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