This past week I've moved from the sofa to the bed with that same low fever and lack of energy. Even taking the dextroamphetamine three days in a row didn't help much. I'd take it at noon, feel better an hour later, try to run my errand, appointment etc., and still find it tough to put one foot in front of the other. I even gave my car a fender-bender in that terrible Trader Joe's garage on Capital Hill. Then the uppers would kick in and I'd be awake until 2 AM.
Friday afternoon I wondered if I needed a blood transfusion, so we ran to see The Amazing & Wonderful Nurse Jacque for a blood draw. No transfusion needed, just feeling icky, but thanks to our friend T and the interconnectedness of Facebook, we ate a delicious salmon dinner last night. I even had a glass of rose!
Today I actually woke up feeing well-ish. Due to the uppers, I hadn't fallen asleep until two o'clock in the morning, so I stayed in bed until 11 AM, ate something and took my morning meds, sat outside in my pajamas and a blanket in the sun for an hour, then went back to bed until 3 PM. I wish I'd taken a selfie to post. Imagine me wrapped to my chin in a maroon blanket that's covered with dog hair.
D stopped by unexpectedly to visit and we chatted over tea for an hour. That's given me some extra oomph to make pizza for dinner before the TJ pizza dough died. Rik and I will enjoy pizza with mushrooms for dinner, another glass of rose, and have better expectations for Sunday.
Costco anyone?
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
May 30, 2015
April 20, 2015
Port removal update
Last Friday they removed the current (my second!) port-a-cath. The fistula just below it showed signs of a staph infection, so now hopefully the red line on my neck will heal along with any other issues.
Conscious sedation (i.e. Versed and Fentanyl) gives one an odd feeling. I undressed, put on a hospital gown and an extra pair of socks, and a nurse started an IV line in my right arm. They rolled me from the prep area into the interventional radiology surgery area, which featured lots of high tech x-ray etc. equipment and an enormous computer screen for the doc to track his work.
I scooted from the gurney onto the "table" and tilted my head to the left, away from the port site, while Nurse Romeo set up a blue fabric screen with a big hole out the left side, to prevent claustrophobia on my part.
The nurse gave me Fentanyl first (for pain relief) and I almost immediately went into la-la land. Then she gave me the Versed and I was no longer aware of anything.
Versed is funny: you probably can answer questions the staff put to you, but you don't remember what's happening from moment to moment. Rik will have to say if I repeated myself over and over again afterwards, which is the typical side effect.
We went to lunch at Mediterranean Kitchen (oh those farmer's wings!) and then walked back to Swedish for my monthly shot of Faslodex and my every two months' dose of bone-strengthening Aredia.
It ended up a very long day. Rik had to go home to feed the dogs, then came back for me at 5 PM. In the meantime, Dr G walked over to say hi and check in with me before he left for the day.
After we came home, I crashed on the bed for a couple of hours, woke up at 8 PM, had a snack, and took the first dose of Ibrance round 2. I spent the weekend recovering, relaxing in the sunny weather and am ready for today's scans.
Conscious sedation (i.e. Versed and Fentanyl) gives one an odd feeling. I undressed, put on a hospital gown and an extra pair of socks, and a nurse started an IV line in my right arm. They rolled me from the prep area into the interventional radiology surgery area, which featured lots of high tech x-ray etc. equipment and an enormous computer screen for the doc to track his work.
I scooted from the gurney onto the "table" and tilted my head to the left, away from the port site, while Nurse Romeo set up a blue fabric screen with a big hole out the left side, to prevent claustrophobia on my part.
The nurse gave me Fentanyl first (for pain relief) and I almost immediately went into la-la land. Then she gave me the Versed and I was no longer aware of anything.
Versed is funny: you probably can answer questions the staff put to you, but you don't remember what's happening from moment to moment. Rik will have to say if I repeated myself over and over again afterwards, which is the typical side effect.
We went to lunch at Mediterranean Kitchen (oh those farmer's wings!) and then walked back to Swedish for my monthly shot of Faslodex and my every two months' dose of bone-strengthening Aredia.
It ended up a very long day. Rik had to go home to feed the dogs, then came back for me at 5 PM. In the meantime, Dr G walked over to say hi and check in with me before he left for the day.
After we came home, I crashed on the bed for a couple of hours, woke up at 8 PM, had a snack, and took the first dose of Ibrance round 2. I spent the weekend recovering, relaxing in the sunny weather and am ready for today's scans.
March 27, 2015
Ibrance update
The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.
Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.
I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.
So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!
Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.
I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.
So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!
March 19, 2015
A week with Ibrance
This week I've been getting used to Ibrance (palbociclib). This is the brand new chemo recently approved by the FDA.
I took the first dose last Thursday morning and felt woozy and slightly nauseous all day long. After asking my nurse, I switched to taking it at night. Her theory: if I took it at night, the nausea etc. might not bother me as much. All weekend long I was still slightly nauseous and tired, but by Monday morning I felt like my usual self. That's continued for the rest of the week.
Other side effects have included joint pain in my wrists and elbows as well as in my hips, but hip pain was a chronic discomfort long before I took the first dose of Ibrance. I've felt moderately fatigued, and sleep about 12 hours a night. If I feel nauseous, I take Ativan and it stops the nausea but also puts me to sleep. So I've napped every afternoon as well.
I've had an odd side effect. I've felt a strong need to urinate, combined with low back pain, that caused me to suspect I had a urinary tract infection. Lab tests indicated no trace of an infection, but I still had that too- frequent urge to "go." Nurse J is looking into this as a possible side effect, and a friend who is on the extended trial at Swedish told me that one of those women reported something similar. We shall see. I've been taking AZO over-the-counter to help deal with the pain and discomfort I experience at night. Last night was the first night I slept straight through from 1 AM (the last time I gout out of bed to pee) until noon.
Now it's time for my nighttime snack. Ibrance must be taken with food. Let's see, shall I have a bowl of cereal? Cracker with cream cheese or nut butter? Half a toasted bagel with butter? My stomach grumbled at that last, so bagel it is.
Do send me your ideas for a quick and tasty late night snack, preferably low in sugar. I clearly have to expand my snacking horizons...
I took the first dose last Thursday morning and felt woozy and slightly nauseous all day long. After asking my nurse, I switched to taking it at night. Her theory: if I took it at night, the nausea etc. might not bother me as much. All weekend long I was still slightly nauseous and tired, but by Monday morning I felt like my usual self. That's continued for the rest of the week.
Other side effects have included joint pain in my wrists and elbows as well as in my hips, but hip pain was a chronic discomfort long before I took the first dose of Ibrance. I've felt moderately fatigued, and sleep about 12 hours a night. If I feel nauseous, I take Ativan and it stops the nausea but also puts me to sleep. So I've napped every afternoon as well.
I've had an odd side effect. I've felt a strong need to urinate, combined with low back pain, that caused me to suspect I had a urinary tract infection. Lab tests indicated no trace of an infection, but I still had that too- frequent urge to "go." Nurse J is looking into this as a possible side effect, and a friend who is on the extended trial at Swedish told me that one of those women reported something similar. We shall see. I've been taking AZO over-the-counter to help deal with the pain and discomfort I experience at night. Last night was the first night I slept straight through from 1 AM (the last time I gout out of bed to pee) until noon.
Now it's time for my nighttime snack. Ibrance must be taken with food. Let's see, shall I have a bowl of cereal? Cracker with cream cheese or nut butter? Half a toasted bagel with butter? My stomach grumbled at that last, so bagel it is.
Do send me your ideas for a quick and tasty late night snack, preferably low in sugar. I clearly have to expand my snacking horizons...
December 12, 2014
Two of three problems fixed
1. A head cold since November 8th;
2. A sinus infection since last week;
3. Anemia (low red blood cell count)
In somewhat different order:
Last week the pounding in my head and pain in my sinuses was clearly, in my experience, a sinus infection of great magnitude. It took me a few days to get a referral and an appointment with an ear-nose-throat doctor (ENT). Yet another one of my ever-growing medical specialists, Dr Burgoyne diagnosed me right away, prescribed antibiotics, and told me to call by Thursday if things hadn't improved. Which they have.
At Wednesday's chemo session, Dr G took a look at my labs and told the nurse I had anemia and needed a blood transfusion. This has happened only once before over these past 12+ years. (I love saying "12+ years!") They type and cross your blood each time and yes, I'm still O+, and give you Benadryl and Tylenol before you get the blood.
On Thursday I received two liters of blood, which took almost seven hours, from 9:30 am to 4 pm. I picked up a mocha on the way to the hospital and noshed on chocolate throughout the day. Plus I had the usual delicious Swedish lunch of soup, tuna sandwich on rye, and chips for the second day in a row. I napped most of the day but did manage to read the newspaper. I drove home and went to bed at 6:00.
Today I felt in recovery mode after being at Swedish two days in a row. I slept in, eventually waking up to shower, change the sheets, start laundry, feed myself, etc. My friend G and I were supposed to go to the local Star Trek convention today, but I lacked the energy. I didn't even have enough energy to walk the dogs, so they have been canoodling with me all day instead and nobody complained. Rik will be home soon and he will walk them. I'll roast a chicken in honor of Shabbat and the fact that my cheeks are now pink once more!
PS I still have the head cold. What can you do? Send me some virtual chicken soup, please.
2. A sinus infection since last week;
3. Anemia (low red blood cell count)
In somewhat different order:
Last week the pounding in my head and pain in my sinuses was clearly, in my experience, a sinus infection of great magnitude. It took me a few days to get a referral and an appointment with an ear-nose-throat doctor (ENT). Yet another one of my ever-growing medical specialists, Dr Burgoyne diagnosed me right away, prescribed antibiotics, and told me to call by Thursday if things hadn't improved. Which they have.
At Wednesday's chemo session, Dr G took a look at my labs and told the nurse I had anemia and needed a blood transfusion. This has happened only once before over these past 12+ years. (I love saying "12+ years!") They type and cross your blood each time and yes, I'm still O+, and give you Benadryl and Tylenol before you get the blood.
On Thursday I received two liters of blood, which took almost seven hours, from 9:30 am to 4 pm. I picked up a mocha on the way to the hospital and noshed on chocolate throughout the day. Plus I had the usual delicious Swedish lunch of soup, tuna sandwich on rye, and chips for the second day in a row. I napped most of the day but did manage to read the newspaper. I drove home and went to bed at 6:00.
Today I felt in recovery mode after being at Swedish two days in a row. I slept in, eventually waking up to shower, change the sheets, start laundry, feed myself, etc. My friend G and I were supposed to go to the local Star Trek convention today, but I lacked the energy. I didn't even have enough energy to walk the dogs, so they have been canoodling with me all day instead and nobody complained. Rik will be home soon and he will walk them. I'll roast a chicken in honor of Shabbat and the fact that my cheeks are now pink once more!
PS I still have the head cold. What can you do? Send me some virtual chicken soup, please.
November 24, 2014
Sniffle sniffle
For the past ten days I've had innumerable cups of tea (the hot water just came to a boil now). Plenty of Tylenol. So many hours on the couch or in bed. And yet this cold, or whatever it is, remains stuck with me. Plus last week's Avastin gave me nosebleeds, and the Abraxane fatigue is on top of everything else.
In these few days before the Thanksgiving holiday, I know I can't get in to see Dr G (I tried last week). So for what I hope is a minor upper respiratory thing-y, I will try to call my primary care doctor and see a) if she can see me, and b) if there's anything she can do. If Dr K is too busy I may have to ride out this cold-or-whatever-it-is until I see Dr G next week.
Not looking for advice here; just "pissing and moaning" about feeling yucky. I hardly ever catch a cold, and certainly not one which lasts this long.
In these few days before the Thanksgiving holiday, I know I can't get in to see Dr G (I tried last week). So for what I hope is a minor upper respiratory thing-y, I will try to call my primary care doctor and see a) if she can see me, and b) if there's anything she can do. If Dr K is too busy I may have to ride out this cold-or-whatever-it-is until I see Dr G next week.
Not looking for advice here; just "pissing and moaning" about feeling yucky. I hardly ever catch a cold, and certainly not one which lasts this long.
November 11, 2014
November 02, 2014
Acupuncture
I may not have blogged already about treating my neuropathy with acupuncture. Someone in my support group mentioned this as a viable alternative and I decided to check it out. I'd tried acupuncture the second time I was on Abraxane and it did seem to give some relief. (Unfortunately, Dr G tried Taxol and it brought the neuropathy in my feet back, raging, after only one dose.)
This time I am seeing Dr Gregory Rudolph at Swedish Pain and Headache Services. He's an MD as well as a licensed acupuncturist.
The treatment goes in six visits - four that are one week apart, and the last two which are two weeks apart. He uses acupuncture needles plus mild electric stimulation.
After the first visit, I didn't notice any difference.
On the second visit, in additional to needles on the top of my feet and shins, Dr Rudolph placed one needle in the ball of each foot and a small, gold stud in each ear. Evidently the ear is a microcosm of the body and this was supposed to help with pain management. I don't know which point was responsible - the ear or the ball of the foot - but I could barely walk that week and the pain/numbness/tingling felt out of control. I was miserable.
I told Dr Rudolph about this on my third visit. I wanted to avoid the ear studs, since placing them was painful to me and I hadn't brought along my lidocaine cream. We agreed to try it the next time with me using the cream. He did not place any needles on the bottom of my feet.
For the fourth visit, I was prepared and used the lido cream about 30 minutes before my appointment. Dr Rudolph placed two gold studs in each ear, but hadn't told me in advance where the second stud was to go, so that area was not treated with lido cream. Given my lack of discomfort with the numbed ear, he agreed that the lido cream worked and put the second stud in a spot that would also work for pain management and where I had rubbed in the lido cream. Again, he did not put needles on the balls of my feet.
That was last Thursday. All four gold studs are still in place. My feet don't feel any different. Dr Rudolph had asked if my energy felt different. Since I spent all of Friday and much of Saturday in bed, I can't say that I have better energy. Different - as in fatigue - just not better.
I start another cycle of Abraxane tomorrow and will get acupuncture again on Thursday. We'll see how it helps!
This time I am seeing Dr Gregory Rudolph at Swedish Pain and Headache Services. He's an MD as well as a licensed acupuncturist.
The treatment goes in six visits - four that are one week apart, and the last two which are two weeks apart. He uses acupuncture needles plus mild electric stimulation.
After the first visit, I didn't notice any difference.
On the second visit, in additional to needles on the top of my feet and shins, Dr Rudolph placed one needle in the ball of each foot and a small, gold stud in each ear. Evidently the ear is a microcosm of the body and this was supposed to help with pain management. I don't know which point was responsible - the ear or the ball of the foot - but I could barely walk that week and the pain/numbness/tingling felt out of control. I was miserable.
I told Dr Rudolph about this on my third visit. I wanted to avoid the ear studs, since placing them was painful to me and I hadn't brought along my lidocaine cream. We agreed to try it the next time with me using the cream. He did not place any needles on the bottom of my feet.
For the fourth visit, I was prepared and used the lido cream about 30 minutes before my appointment. Dr Rudolph placed two gold studs in each ear, but hadn't told me in advance where the second stud was to go, so that area was not treated with lido cream. Given my lack of discomfort with the numbed ear, he agreed that the lido cream worked and put the second stud in a spot that would also work for pain management and where I had rubbed in the lido cream. Again, he did not put needles on the balls of my feet.
That was last Thursday. All four gold studs are still in place. My feet don't feel any different. Dr Rudolph had asked if my energy felt different. Since I spent all of Friday and much of Saturday in bed, I can't say that I have better energy. Different - as in fatigue - just not better.
I start another cycle of Abraxane tomorrow and will get acupuncture again on Thursday. We'll see how it helps!
October 09, 2014
From one holiday to the next
It always feels as thought autumn is full of holidays and holy days. From starting a new year to the Great I'm Sorry (aka Yom Kippur) and then sliding into the harvest fest of Sukkot, it's one celebration after another. Unless you have metastatic cancer.
Ringing in the new year was fun and spiritually satisfying. Yom Kippur was more challenging: the rush to eat dinner at 4:30 pm in order to be at synagogue by 5:45 pm; the long 25 hour fast; the inner cleansing and asking for forgiveness; remembering those we've lost; and finally a great hullaballoo at the end when we're practically dancing in the aisles during the final shofar blast.
The break-fast felt quiet after so much energy spent during the day. The next morning, Rik put up our sukkah (temporary shanty) with help from friends, and more friends came over to decorate it. My sukkah, now in it's 22nd year, looks like a lifetime of memories from our twenty years of marriage and even before.
But this Abraxane is beginning to wear me down. On Monday I felt fine, but got hit with diarrhea immediately upon arriving home. Tuesday I could barely get out of bed; it was just as well that Rik needed the car all day. Wednesday and today have been better but not terrific. I expect next week's chemo to hit me as hard. That will be the third dose in this second round.
So now I'm going to try to relax, cuddle with the dogs, maybe watch some TV or read a book. I'm already in my jammies.
Ringing in the new year was fun and spiritually satisfying. Yom Kippur was more challenging: the rush to eat dinner at 4:30 pm in order to be at synagogue by 5:45 pm; the long 25 hour fast; the inner cleansing and asking for forgiveness; remembering those we've lost; and finally a great hullaballoo at the end when we're practically dancing in the aisles during the final shofar blast.
The break-fast felt quiet after so much energy spent during the day. The next morning, Rik put up our sukkah (temporary shanty) with help from friends, and more friends came over to decorate it. My sukkah, now in it's 22nd year, looks like a lifetime of memories from our twenty years of marriage and even before.
But this Abraxane is beginning to wear me down. On Monday I felt fine, but got hit with diarrhea immediately upon arriving home. Tuesday I could barely get out of bed; it was just as well that Rik needed the car all day. Wednesday and today have been better but not terrific. I expect next week's chemo to hit me as hard. That will be the third dose in this second round.
So now I'm going to try to relax, cuddle with the dogs, maybe watch some TV or read a book. I'm already in my jammies.
July 06, 2014
Resting up or recovering?
Ever since Rik came home I have spent a lot of the last week sleeping or napping. I think I am making up for lost sleep (dogs waking me every morning at 5 am) while Rik was away. Or it could be regular Xeloda/Methotrexate fatigue. I am looking forward to having the rest of the month off of chemo!
My tongue is much better but lately my BRONJ spot has been bugging me. I am going to try to see my dentist this week. I've had multiple infections in this spot in my mouth and I don't want to go to Bulgaria already sick with something.
Speaking of, I feel almost ready to depart. Still some medical stuff to take care of (unbelievable! I've been doing this for weeks now but I keep forgetting things.). Money issues all squared away, packing list started, borrowing a mid-size suitcase from a friend, etc. Just have to learn the last two songs…..
My tongue is much better but lately my BRONJ spot has been bugging me. I am going to try to see my dentist this week. I've had multiple infections in this spot in my mouth and I don't want to go to Bulgaria already sick with something.
Speaking of, I feel almost ready to depart. Still some medical stuff to take care of (unbelievable! I've been doing this for weeks now but I keep forgetting things.). Money issues all squared away, packing list started, borrowing a mid-size suitcase from a friend, etc. Just have to learn the last two songs…..
June 26, 2014
Post-Xeloda stuff
I finished my recent round of Xeloda last Saturday and by Monday the side effects kicked in hard. Painful numb feet (neuropathy and Hand-Foot Syndrome), cracked and painful hands (Hand-Foot Syndrome again), fatigue, diarrhea etc. Plus Rik is away and so I have picked up all his daily chores in the meanwhile, such as waking up at 6 AM to feed the dogs, walking the dogs twice daily, and more. It makes me more tired than usual, and perhaps that's why I feel the Xeloda after-effects more than usual.
I had my last major infusion (before going to Bulgaria) of Avastin, Aredia and Faslodex yesterday. It took more than three hours plus the time I waited for Dr G to sign the orders. (I do think he's the best, but getting the details done while I wait just frustrates me.) Then of course I had to fight rush hour traffic, feed and walk dogs. By 6 PM I was crashing. Good thing I predicted this would happen and moved choir rehearsal away from here so that I could sleep.
Rik texted me at 1 AM this morning. (I don't think he read the time difference correctly.) But it was our first chance to "talk" since he left. Even though texting is no substitute for a real conversation, we got caught up a bit.
I had my last major infusion (before going to Bulgaria) of Avastin, Aredia and Faslodex yesterday. It took more than three hours plus the time I waited for Dr G to sign the orders. (I do think he's the best, but getting the details done while I wait just frustrates me.) Then of course I had to fight rush hour traffic, feed and walk dogs. By 6 PM I was crashing. Good thing I predicted this would happen and moved choir rehearsal away from here so that I could sleep.
Rik texted me at 1 AM this morning. (I don't think he read the time difference correctly.) But it was our first chance to "talk" since he left. Even though texting is no substitute for a real conversation, we got caught up a bit.
June 13, 2014
Just feeling a little tired
I started round 17 of Xeloda this past Sunday. My tumor markers are up a bit, but Dr G says "that's just noise." Meanwhile I'm still taking my chemo cocktail and we might change to something else later this summer.
So far tithe Xeloda is making me feel a little tired, as usual. The Hand-Foot Syndrome + neuropathy + fatigue usually have me on the couch by 4 PM. Today the plain chocolate birthday cake for Rik and the walnut-black pepper biscotti he asked for are still in the oven. So my nap will be delayed.
It's not actually the sleeping so much, although I did take a major nap on Monday -- fell asleep around 4 PM, woke up at 9:30 PM when Rik said "Jill, it's time to go to bed," and after eating a leftover slice of pizza, got into bed at 11 PM, took an Ambien, and slept until 11 AM. That's not my usual pattern, when you hit the wall, you hit the wall. Hard.
I will fold clean laundry, make the bed, finish the cake in time to drive to G and D, and maybe snooze in the car. Rik's not home yet.
So far tithe Xeloda is making me feel a little tired, as usual. The Hand-Foot Syndrome + neuropathy + fatigue usually have me on the couch by 4 PM. Today the plain chocolate birthday cake for Rik and the walnut-black pepper biscotti he asked for are still in the oven. So my nap will be delayed.
It's not actually the sleeping so much, although I did take a major nap on Monday -- fell asleep around 4 PM, woke up at 9:30 PM when Rik said "Jill, it's time to go to bed," and after eating a leftover slice of pizza, got into bed at 11 PM, took an Ambien, and slept until 11 AM. That's not my usual pattern, when you hit the wall, you hit the wall. Hard.
I will fold clean laundry, make the bed, finish the cake in time to drive to G and D, and maybe snooze in the car. Rik's not home yet.
May 23, 2014
Xeloda kicking my butt
I haven't posted recently because this second week of Xeloda has been very tough. My feet are red and painful, my hands cracking, even my tongue has Hand-Foot Syndrome. I'm also really fatigued and no matter how much time I spend asleep, I never seem to be awake enough.
However, I'm really looking forward to Folklife this weekend! Even if I can only attend on Sunday to perform and maybe dance a bit, it's my official kickoff to summer. And thanks to Dr G, I should have enough energy to handle it.
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Hear me sing with my choir Dunava at the NW Folklife Festival on Sunday May 25 at 4:20 PM at the Cornish Playhouse (formerly Intiman Theatre)
We're part of the Slavic Voices music performance, which begins at 3 pm. Arrive early to get a seat!
However, I'm really looking forward to Folklife this weekend! Even if I can only attend on Sunday to perform and maybe dance a bit, it's my official kickoff to summer. And thanks to Dr G, I should have enough energy to handle it.
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We're part of the Slavic Voices music performance, which begins at 3 pm. Arrive early to get a seat!
From Folklife: "Even better, Folklife is committed to making sure everyone can enjoy the Festival. If you can afford the $10 suggested donation great, if not, even a $2 donation helps keep Folklife free."
May 14, 2014
Xeloda round 16
I had more methotrexate on Sunday and started Xeloda round 16 the same day. So far I want to touch my finger tips all the time, my feet are still sore from neuropathy and hand-foot syndrome, but fatigue hasn't hit too hard yet. I've been running errands, getting together with friends, etc. Today I have my Avastin infusion and then will treat my self to an ice cream cone on this gloriously hot and sunny day. Then rehearsal tonight. Eventually I will do the piles of ironing, but I think I'll wait for a cooler, wetter day to do so.
Forgot to say that the other day I saw my incredibly handsome and friendly dermatologist for the first time a couple of years. He (as always) found a spot he wanted to biopsy. We're both sure it's nothing but you never know. The biopsy site is so high up on my back that I can't reach it myself, so I am showering at night instead of in the morning in order for Rik to change the bandage daily. Or I could wake up at 6 AM to shower before Rik leaves for school, then go back to bed. What a topsy-turvy world!
Forgot to say that the other day I saw my incredibly handsome and friendly dermatologist for the first time a couple of years. He (as always) found a spot he wanted to biopsy. We're both sure it's nothing but you never know. The biopsy site is so high up on my back that I can't reach it myself, so I am showering at night instead of in the morning in order for Rik to change the bandage daily. Or I could wake up at 6 AM to shower before Rik leaves for school, then go back to bed. What a topsy-turvy world!
April 08, 2014
Back on Xeloda
I am back on another cycle of Xeloda (round 15) and have one more dose of Methotrexate before I see Dr G this week. My tumor markers drawn last week are about the same as the previous time; we'll see how much they change this week after the fourth dose of Methotrexate.
Meanwhile I am still easily fatigued but trying to keep accomplishing what I need to do. I had a busy weekend: I lead musaf services at synagogue (and someone told me my voice was "ethereal" -- that was really nice to hear!); we joined friends for smoked meat i.e. pastrami sandwiches and a to watch basketball game on TV; there was a congregational meeting Sunday morning; and our Food and Friends group met for the last time Sunday night. I did make an excellent Anarchy Cake thanks to G loaning me the recipe, but forgot to take a photo. Of course I made a few changes to incorporate some chocolate. I really recommend this recipe.
Yesterday I hacked at the ivy and trimmed back some ferns, then visited a friend in the hospital. Rik and I watched the very funny "Lone Ranger" movie starring Johnny Depp. This morning, however, it all caught up with me and I stayed in bed until noon. Now I am going to try to get the ironing done. I haven't even thought yet about what new tricks to include in Passover seder. Thank goodness friends are hosting us both nights!
Meanwhile I am still easily fatigued but trying to keep accomplishing what I need to do. I had a busy weekend: I lead musaf services at synagogue (and someone told me my voice was "ethereal" -- that was really nice to hear!); we joined friends for smoked meat i.e. pastrami sandwiches and a to watch basketball game on TV; there was a congregational meeting Sunday morning; and our Food and Friends group met for the last time Sunday night. I did make an excellent Anarchy Cake thanks to G loaning me the recipe, but forgot to take a photo. Of course I made a few changes to incorporate some chocolate. I really recommend this recipe.
Yesterday I hacked at the ivy and trimmed back some ferns, then visited a friend in the hospital. Rik and I watched the very funny "Lone Ranger" movie starring Johnny Depp. This morning, however, it all caught up with me and I stayed in bed until noon. Now I am going to try to get the ironing done. I haven't even thought yet about what new tricks to include in Passover seder. Thank goodness friends are hosting us both nights!
Anarchy Cake (6-8
servings)
8 ounces / about 1 ½ cups sliced fresh strawberries
½ cup plus 1 tablespoon sugar, divided
¾ cup cake flour
¾ teaspoon baking powder
pinch of salt
1 egg
¼ teaspoon finely grated lemon zest
¼ cup extra virgin olive oil
¼ cup milk
½ teaspoon balsamic vinegar
1 tablespoon turbinado or granulated sugar for sprinkling on
top
Preheat oven to 350 degrees.
Line the bottom of a 10-inch spring form pan with parchment paper, brush with oil and lightly dust with flour.
In a medium bowl, gently toss the fruit with 1 tbsp of the sugar and set aside.
In a small bowl, sift together the flour, baking powder and salt and set aside.
Using an electric mixer, beat the egg with ½ cup sugar and lemon zest until light, fluffy and pale. (This could take as long as 3 minutes.) Add the oil, then the milk and the balsamic vinegar, beating until fully combined. Using a rubber spatula, fold in the flour mixture. Pour the batter into the prepared pan and drop the strawberries over the top. Sprinkle with 1 tbsp sugar.
Bake for 50 minutes or until the top is a beautiful golden brown and a toothpick inserted into the center comes out clean. Cool on a wire rack for about 5 minutes, then remove sides of pan. Serve warm or at room temperature. Delicious with whipped cream!
Note from Seattle Times: I’ve found that when you use fruit, the cake comes out like a cross between a torte and a cobbler. It’s a tender, low profile cake that’s not too sweet. A great emergency dessert that also works for tea time.
In a medium bowl, gently toss the fruit with 1 tbsp of the sugar and set aside.
In a small bowl, sift together the flour, baking powder and salt and set aside.
Using an electric mixer, beat the egg with ½ cup sugar and lemon zest until light, fluffy and pale. (This could take as long as 3 minutes.) Add the oil, then the milk and the balsamic vinegar, beating until fully combined. Using a rubber spatula, fold in the flour mixture. Pour the batter into the prepared pan and drop the strawberries over the top. Sprinkle with 1 tbsp sugar.
Bake for 50 minutes or until the top is a beautiful golden brown and a toothpick inserted into the center comes out clean. Cool on a wire rack for about 5 minutes, then remove sides of pan. Serve warm or at room temperature. Delicious with whipped cream!
Note from Seattle Times: I’ve found that when you use fruit, the cake comes out like a cross between a torte and a cobbler. It’s a tender, low profile cake that’s not too sweet. A great emergency dessert that also works for tea time.
From Faith Willinger, "The Best American Recipes 2002-2003," edited by Fran McCullough
My Substitutions:
Sub ¼ cup cocoa for ¼ cup flour
Sub ¼ cup cocoa for ¼ cup flour
Sub ¼ cup coffee for ¼ cup milk (to make it parve)
Okay to omit lemon zest
Sprinkle a handful of cocoa nibs over the batter
Top with coffee-flavored whipped cream
To make it for Passover, you could even sub some matzo meal cake flour for the pastry flour and use the 1/4 cup of cocoa.
April 02, 2014
Fatigue hitting me hard
The reason for the lack of posting is that fatigue has struck. Between the Xeloda and the Methotrexate, I am getting the full double whammy. I usually have about three good hours per day. If I split them up and nap between, I cope a little better, but if I use my time all at once, I hit the "wall" hard and really crash.
For instance, yesterday it was sunny and warm. I decided to walk the dogs to the drugstore and back, about 20 blocks round trip. I was dragging so by the time I got home, I could barely move. My feet hurt from the neuropathy and Hand-Foot Syndrome. My energy had completely dissipated. I was hot (it really was warm out). All I could manage was to get myself onto the sofa for a couple of hours. Then I felt better, hungry even, but those two hours were in complete fatigue. And all that from just walking the dogs!
Now I have to sign off to crash and later deal with some medical papers (bills, etc.)
For instance, yesterday it was sunny and warm. I decided to walk the dogs to the drugstore and back, about 20 blocks round trip. I was dragging so by the time I got home, I could barely move. My feet hurt from the neuropathy and Hand-Foot Syndrome. My energy had completely dissipated. I was hot (it really was warm out). All I could manage was to get myself onto the sofa for a couple of hours. Then I felt better, hungry even, but those two hours were in complete fatigue. And all that from just walking the dogs!
Now I have to sign off to crash and later deal with some medical papers (bills, etc.)
March 24, 2014
Overdoing and paying the price
Sometimes I overcommit myself. It could be because I forget to measure my energy, or because I don't know what the impact of a new drug will be. This weekend it was both.
Insomnia on Friday night.
Saw the naturopath first thing Saturday morning, now his only time to see patients.
Bought 48 Theo chocolate bars for Rik's upcoming classroom unit on agriculture and chocolate simulation exercise.
Went to synagogue to meet the final assistant rabbi candidate finalist.
Napped for two hours.
Rehearsed for that evening's choir gig and scared the daylights out of my friends, who were convinced that I would collapse on them.
"Stepped up" to perform -- the show must go on!
Attended a board party to meet to final rabbinic candidate.
Crashed at home to - ta da! - more insomnia.
Barely made it to Sunday brunch but enjoyed coffee, bagels, and TK's art. Went home with four original pieces!
Napped again and went out with Rik for a hamburger.
Slept this time like the proverbial log.
Barely made it to this morning's meeting and lunch with a friend.
Napped again with both dogs. Rik joined us after school.
What's the price for this weekend? Diarrhea, fatigue, hand-foot syndrome, queasy tummy.
I think I was crazy, but I did it all and managed to have fun with everything. As an MBTI extrovert, I get my energy from being with people, cancer notwithstanding.
Insomnia on Friday night.
Saw the naturopath first thing Saturday morning, now his only time to see patients.
Bought 48 Theo chocolate bars for Rik's upcoming classroom unit on agriculture and chocolate simulation exercise.
Went to synagogue to meet the final assistant rabbi candidate finalist.
Napped for two hours.
Rehearsed for that evening's choir gig and scared the daylights out of my friends, who were convinced that I would collapse on them.
"Stepped up" to perform -- the show must go on!
Attended a board party to meet to final rabbinic candidate.
Crashed at home to - ta da! - more insomnia.
Barely made it to Sunday brunch but enjoyed coffee, bagels, and TK's art. Went home with four original pieces!
Napped again and went out with Rik for a hamburger.
Slept this time like the proverbial log.
Barely made it to this morning's meeting and lunch with a friend.
Napped again with both dogs. Rik joined us after school.
What's the price for this weekend? Diarrhea, fatigue, hand-foot syndrome, queasy tummy.
I think I was crazy, but I did it all and managed to have fun with everything. As an MBTI extrovert, I get my energy from being with people, cancer notwithstanding.
December 14, 2013
Penultimate day of Xeloda round 12
Yesterday was the second-to-last day of round 12 of Xeloda and it hit me hard. By mid-morning I had diarrhea, followed by fatigue, hand-foot issues, and mouth sores. I decided to cancel the neighborhood Shabbat dinner we'd planned to host for some folks from our synagogue because I could barely hobble, much less shop and cook. Everyone understood and sent me wishes to feel better soon. I slept the rest of the day. Rik ordered some Chines food and I crawled into bed around 8 PM.
The hard thing about all of this was that I'd forgotten how awful the chemo side effects can be, since I don't experience very much on Xeloda. Yes, I have a lot of hand-foot syndrome, but for some reason it wasn't so bad this month. I didn't even have to use henna! But I keep forgetting from month to month what the last two days of each cycle and the first two days of the time off can be like. Xeloda is cumulative, so I feel much worse at the end of the cycle than at the beginning.
So today is the last day. My feet hurt so much when I got out of bed to use the bathroom that I couldn't bear to stand. Rik brought me some yogurt and my morning meds but I stayed in bed until 1 PM. Hunger finally drove me up and by then my feet were less tender, the diarrhea had stopped and I really couldn't sleep any longer.
This is how it goes: I feel rotten, I blog about how rough it is. Then I feel better, I live my life, and I forget to blog except for special things, like holiday celebrations.
I guess I need to put my blogging on a schedule so that I don't go too many days on "quiet mode."
The hard thing about all of this was that I'd forgotten how awful the chemo side effects can be, since I don't experience very much on Xeloda. Yes, I have a lot of hand-foot syndrome, but for some reason it wasn't so bad this month. I didn't even have to use henna! But I keep forgetting from month to month what the last two days of each cycle and the first two days of the time off can be like. Xeloda is cumulative, so I feel much worse at the end of the cycle than at the beginning.
So today is the last day. My feet hurt so much when I got out of bed to use the bathroom that I couldn't bear to stand. Rik brought me some yogurt and my morning meds but I stayed in bed until 1 PM. Hunger finally drove me up and by then my feet were less tender, the diarrhea had stopped and I really couldn't sleep any longer.
This is how it goes: I feel rotten, I blog about how rough it is. Then I feel better, I live my life, and I forget to blog except for special things, like holiday celebrations.
I guess I need to put my blogging on a schedule so that I don't go too many days on "quiet mode."
October 25, 2013
Quickly - new dog
Dr G approved one more round of Xeloda and is giving me an additional week off, because the hand-foot syndrome is still annoyingly painful. Other than continuing fatigue, I am healthy!
Here are photos of Bobka and Boychik (he's the new one, the cocker spaniel).
Here are photos of Bobka and Boychik (he's the new one, the cocker spaniel).
October 22, 2013
Catching up
I realize I haven't been blogging lately. The last bit of Xeloda round 9 really got to my hands and feet. For round 10 I reduced the dose again, but my hands have still not completely recovered. The skin on the tips of my finger is peeling and has little sensation or pain, depending on what I'm trying to do. For instance, for about a week I couldn't turn on a lamp because holding the switch to turn it was so painful. Rik had to cook for a couple of days too, when I found it painful to hold a knife. Fatigue played a role too, and I had a couple of days of diarrhea.
Last week we had painters in the house to fix the bedroom ceiling where water had leaked. We had the roof re-done during the summer, but the painter wasn't available until now. So every day I woke up when Rik left the house, about 6:45 AM, which is very tough on me. The painters arrived around 8 AM every day, but didn't always stay the whole day as things were drying. The result, aside from my fatigue, is a beautiful teal blue color on the walls, a warm cream color on the trim, and a lovely lighter teal on the ceiling. I bought drapes in brown with a teal, green and yellow pattern.
We moved the furniture back in (having slept on the sleeper sofa during the week) and friend L came over and reconnected the dealing fixture. All that's left is to rehang the art, a small mirror, and the Japanese haori jacket S gave me. It's purple with teal trim, so it will look beautiful on the teal blue wall.
More later about our new rescue dog!
Last week we had painters in the house to fix the bedroom ceiling where water had leaked. We had the roof re-done during the summer, but the painter wasn't available until now. So every day I woke up when Rik left the house, about 6:45 AM, which is very tough on me. The painters arrived around 8 AM every day, but didn't always stay the whole day as things were drying. The result, aside from my fatigue, is a beautiful teal blue color on the walls, a warm cream color on the trim, and a lovely lighter teal on the ceiling. I bought drapes in brown with a teal, green and yellow pattern.
We moved the furniture back in (having slept on the sleeper sofa during the week) and friend L came over and reconnected the dealing fixture. All that's left is to rehang the art, a small mirror, and the Japanese haori jacket S gave me. It's purple with teal trim, so it will look beautiful on the teal blue wall.
More later about our new rescue dog!
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