What with the Jewish new year last week, chemo and a medical surprise, I haven't had time to write lately. Here is a recap of the latest.
Even though Rosh Hashanah came at the end of my weekly chemo cycle, I overdid it with baking and socializing on Sunday. By Monday morning I didn't have enough energy to go to services, even to see Rik receive the honor of being called to the Torah. (Evidently at 9:20 am I was moaning, "I'm getting up," even as Rik was getting ready to walk out the door.) We did manage to enjoy lunch with friends on Monday.
On Tuesday I actually made it to synagogue for the second day of the holiday, just in time to hear the shofar blown. There is also one part of the new year's service that I love. We bow before God, as in the daily prayer services, but on Rosh Hashanah one can choose to actually prostrate, getting down on the floor and kneeling. I have done this along with the cantorial soloist for many years, partly because I want to know that I can, and partly because this is the one moment in the year when I acknowledge that I don't have control over everything in life. By kneeling before God, I remind myself that it's not all about me. I believe God has a plan, even if I don't know it or can't understand it.
Okay, back to last week.
On Wednesday afternoon I had chemo. When I woke up in the morning, I did something rare and unusual. I called the Amazing and Wonderful Nurse Jacque to say that I felt awful, my feet were in terrible shape from the neuropathy, I'd had an indifferent holiday at best, and to please ask Dr G to consider dropping one of the two chemos. Dr G agreed to drop the Taxol and only give me the carboplatin.
I also complained about a possible urinary tract infection and later I gave a sample to be tested for infection. Dr G prescribed something to help with the frequent need to urinate, which actually hasn't helped much. I'm waiting for tomorrow to call Nurse Jacque about the final results of the urinalysis and hopefully get an antibiotic. Even if it's only a slight infection, something has been going on for ten days. And if it's not an infection, what is it?
While at chemo Dr G decided my red blood cell count was borderline and would likely dip further after that dose of carboplatin. He ordered a blood transfusion. Surprise!
Thursday I went to my support group as usual. The nurses at the wound center changed my chest bandage and decided it hadn't healed much in two weeks. My former port-a-cath site is almost completely healed. At last some good news! The doctor in the wound center said keep on with what we're doing and that he'd been in touch with Dr G about possible options. I see Dr G this week and will learn more then.
The blood transfusion took all of Friday, mostly because I couldn't get up early in the morning. A friend visited until I started to drowse from the IV Benadryl. I slept for more than an hour and missed my 1 pm visitor. Thankfully she came back, brought lunch, and we had a good talk. Good surprises in the making!
I'm still having insomnia, even with my naturopathic doctor's recommendation of WellMind. Last night I didn't fall asleep until almost 2 am. My feet still hurt tremendously. I'm now taking medication for high blood pressure likely caused by the chemo. This has been a rough time. I look forward to a week or so break from chemo.
As I said, I see Dr G later this week and hope to have a plan, even if it's another brain MRI. Let's hope the carboplatin lowers my tumor markers and has killed some brain mets!
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
September 20, 2015
September 12, 2015
Insomnia again
I haven't been sleeping well recently, but this takes the cake. It's 12:53 AM Saturday morning. I didn't sleep well last night and on Wednesday night I had terrible dreams. My naturopathic doctor has recommended a new (to me) homeopathic remedy which we bought today -- meaning Friday. Have I slept? No. I couldn't even nap this afternoon.
I finally got out of bed in hope that at least Rik would sleep well. The dogs, of course, sleep through everything except their hunger. I'm ensconced on the sofa, with the iPad in my lap. I expect that I will eventually fall asleep. It may not be until six in the morning, which is usually what happens when I actually force myself out of bed to deal with sleeplessness. That's also the time those dogs get hungry.
Insomnia may seem like the least of my worries but it's very difficult. I find I can't turn off my mind when I get into bed. My feet hurt fiercely from the neuropathy. My skin may be more sensitive, because I itch on my head where it touches the pillow and randomly across my body, tonight around my throat. The open sore mets on my scalp and my chest itch and are painful, but must remain covered. My left arm is in the big blue lymphedema compression garment (I'm left handed) and it's tight. The ONJ spot in my mouth hurts on the right side of my jaw. I've slept on that side my whole life and it's a hard habit to change. The hydrocodone I took before bed doesn't begin to touch all these little things. Together they keep me from sleeping night after night. And when you have metastatic cancer, too many nights of not sleeping soon add up to not dealing well with anything. Especially cancer.
On top of all of this, I clearly had too much water to drink this evening, because I've been running to the toilet every hour since ten o'clock. I took some Uristat to help with that problem, but no dice. I just need to pee a lot.
I guess it's my turn to host the pity party.
August 02, 2015
Stress + anxiety = anxiety + stress
The past week has been filled with stress and anxiety, no matter how you look at it.
Gilda's Club Seattle asked, and I offered to give an interview when Mutual of Omaha's AHA Moment van was in Seattle on Tuesday. If you've not seen these commercials, check out the site. (I don't know when or if my interview will be broadcast, but will try to post if they tell me.)
At first I thought I'd talk about cancer. Then I thought I'd talk about my cousin E, who died last week at the age of 90+. I asked Rik to quickly email me a photo, since the email reminder said to bring something along. But they meant something to hold in my hand, not a digital image. Then I changed my mind again. Everyone has a loss to share. What would make E's death my AHA Moment more powerful than my living with metastatic cancer?
In the end I talked about my cancer, how long it had been in my life. Mostly I spoke about how my recent knowledge of the US government's lack of funding of all research into all metastatic cancers via the National Cancer Institute indicates how little the lives of our citizens seem to matter to our government. The interviewer didn't seem to care for this topic much, but I got very passionate about it. It was a bit of a stress-filled morning.
On Tuesday afternoon I saw my specialty dentist about the ache in my jaw and numbness in my chin. She took x-rays but nothing showed up, as nothing had shown up on the recent CT of the right side of my jaw. My anxiety continued to build, as this could mean anything from TMJ to increased activity in the BRONJ spot in my jaw, to more active brain mets. Or anything else. And it hurt to open my mouth and eat.
Thursday brought my weekly support group plus a visit with Dr G. The usual mixed bag of possibilities opened up yet again. Stress. Rik told Dr G he thinks I've been mixing up my conversation recently. I told Dr G about my issues with typos and not being able to think of the proper word in a sentence (I call this "my feeling stupid"). These symptoms, plus the mouth/jaw and chin pain, could indeed mean anything. Combined with the rise in my tumor markers, Dr G decided I should start Taxol within 24-48 hours, and schedule another brain MRI soon. I had a brain MRI on June 10th, which revealed nothing unusual. Dr G also said I should start raloxifine, an estrogen blocker which somehow I'd never had.
The terrible traffic for the stupid Seafair activities in town caused many of the patients scheduled before me to arrive late. Therefore we waited two and a half hours to see Dr G, spent an hour with him, walked over to the hospital to fill the scrip for raloxifine, and didn't get home until almost 7 pm.
More stress, more anxiety.
On Friday the Swedish Cancer Institute squeezed me in for my first dose of Taxol. I felt okay on Friday afternoon, but took a nap anyway. New drug, a nap is in order. I should get the Taxol once a week for three weeks, then take a week off. This lower dose also should be more tolerable.
On Saturday it was so very hot here that I took a five hour nap with the air conditioner. This was definitely the summer for such a purchase. I have a brain MRI scheduled for this week, as approved by my health insurance company. We'll see what that reveals. At least my jaw hurts less
Finally, today my dear friends D and C came over for brunch. While we were catching up with one another, I truly had an AHA moment: I realized that the stress and anxiety of the past week could easily have caused some of the symptoms I was so worried about. The typos, the conversational idiosyncrasies and worries about new pain might have all converged to cause me more worry and nervousness.
I actually have tolerated the Taxol very well so far, with minimal side effects except my naps. I hope this means that my trip to see my family on the east coast will come off as planned. Plus I hope this means less stress now that I have a plan. This who know me, know that I excel at planning.
Gilda's Club Seattle asked, and I offered to give an interview when Mutual of Omaha's AHA Moment van was in Seattle on Tuesday. If you've not seen these commercials, check out the site. (I don't know when or if my interview will be broadcast, but will try to post if they tell me.)
At first I thought I'd talk about cancer. Then I thought I'd talk about my cousin E, who died last week at the age of 90+. I asked Rik to quickly email me a photo, since the email reminder said to bring something along. But they meant something to hold in my hand, not a digital image. Then I changed my mind again. Everyone has a loss to share. What would make E's death my AHA Moment more powerful than my living with metastatic cancer?
 |
| With Anna Gottlieb, founder and executive director of Gilda's Club Seattle |
 |
| A gift from Mutual of Omaha - my very own clapboard |
On Tuesday afternoon I saw my specialty dentist about the ache in my jaw and numbness in my chin. She took x-rays but nothing showed up, as nothing had shown up on the recent CT of the right side of my jaw. My anxiety continued to build, as this could mean anything from TMJ to increased activity in the BRONJ spot in my jaw, to more active brain mets. Or anything else. And it hurt to open my mouth and eat.
Thursday brought my weekly support group plus a visit with Dr G. The usual mixed bag of possibilities opened up yet again. Stress. Rik told Dr G he thinks I've been mixing up my conversation recently. I told Dr G about my issues with typos and not being able to think of the proper word in a sentence (I call this "my feeling stupid"). These symptoms, plus the mouth/jaw and chin pain, could indeed mean anything. Combined with the rise in my tumor markers, Dr G decided I should start Taxol within 24-48 hours, and schedule another brain MRI soon. I had a brain MRI on June 10th, which revealed nothing unusual. Dr G also said I should start raloxifine, an estrogen blocker which somehow I'd never had.
The terrible traffic for the stupid Seafair activities in town caused many of the patients scheduled before me to arrive late. Therefore we waited two and a half hours to see Dr G, spent an hour with him, walked over to the hospital to fill the scrip for raloxifine, and didn't get home until almost 7 pm.
More stress, more anxiety.
On Friday the Swedish Cancer Institute squeezed me in for my first dose of Taxol. I felt okay on Friday afternoon, but took a nap anyway. New drug, a nap is in order. I should get the Taxol once a week for three weeks, then take a week off. This lower dose also should be more tolerable.
On Saturday it was so very hot here that I took a five hour nap with the air conditioner. This was definitely the summer for such a purchase. I have a brain MRI scheduled for this week, as approved by my health insurance company. We'll see what that reveals. At least my jaw hurts less
Finally, today my dear friends D and C came over for brunch. While we were catching up with one another, I truly had an AHA moment: I realized that the stress and anxiety of the past week could easily have caused some of the symptoms I was so worried about. The typos, the conversational idiosyncrasies and worries about new pain might have all converged to cause me more worry and nervousness.
I actually have tolerated the Taxol very well so far, with minimal side effects except my naps. I hope this means that my trip to see my family on the east coast will come off as planned. Plus I hope this means less stress now that I have a plan. This who know me, know that I excel at planning.
July 24, 2015
Mouth pain
I've posted before about ONJ (osteonecrosis of the jaw), a rotten side effect of taking too many bisphosphonates to strengthen my bones over the years, or in my case, too much Xgeva.
For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).
I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.
I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!
For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).
I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.
I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!
June 03, 2015
Sore skin
After the third of three doses of Abraxane (one cycle) on Monday, the port removal site hurt very seriously and so did my throat. Maybe a six on my personal one to ten scale?
Enough so that I hardly slept that night, even after taking three hydrocodone tabs. I thought maybe Rik had shared a cold with me since my throat felt scratchy. On Tuesday I waited for my afternoon appointments to get Neulasta and to see the wound care nurse. By then it still hurt a lot and with the nurse poking around it hurt even more. I took more hydrocodone after she finished, she called Dr G, and I went to see him.
Dr G ordered an xray to be sure the PICC line was still good, which evidently it is. He decided that all the sore skin, even in my throat, was due to Abraxane. It might be that I've finally had my personal maximum of taxanes. However, he was very excited about news from the American Society of Clinical Oncologists' conference and has a clinical trial in mind for me regarding microsatellite instability and doing a different genetic testing of my cancer. (There will be an article in the New England Journal of Medicine on this but he read an early online version on Monday. ASCO is amazing, Dr G is amazing, and I have no idea how he remembers it all. He didn't even know he would see me on Tuesday!) We also briefly discussed androgen receptor testing.
We've talked about Keytruda and Opdivo, the new drugs given to melanoma and colorectal patients with amazing success. They're related to treating microsatellite instability. It's a whole new world of medicine out there again!
In the meantime I put on a fentanyl patch for the pain, swished some GelClair and tried to gargle to reach the pain in the back of my throat. I didn't ask permission but did 'fess up to The Amazing & Wonderful Nurse Jacque. She can confer with Dr G and tell me to back off but it did hurt SO MUCH and now I feel better.
As Dr G has said from the beginning of our relationship, if I can hold on long enough there will always be something new coming down the road. Luckily for me, my indolent (i.e. lazy, slow-growing) cancer has given me almost thirteen years of life with metastatic disease.
Enough so that I hardly slept that night, even after taking three hydrocodone tabs. I thought maybe Rik had shared a cold with me since my throat felt scratchy. On Tuesday I waited for my afternoon appointments to get Neulasta and to see the wound care nurse. By then it still hurt a lot and with the nurse poking around it hurt even more. I took more hydrocodone after she finished, she called Dr G, and I went to see him.
Dr G ordered an xray to be sure the PICC line was still good, which evidently it is. He decided that all the sore skin, even in my throat, was due to Abraxane. It might be that I've finally had my personal maximum of taxanes. However, he was very excited about news from the American Society of Clinical Oncologists' conference and has a clinical trial in mind for me regarding microsatellite instability and doing a different genetic testing of my cancer. (There will be an article in the New England Journal of Medicine on this but he read an early online version on Monday. ASCO is amazing, Dr G is amazing, and I have no idea how he remembers it all. He didn't even know he would see me on Tuesday!) We also briefly discussed androgen receptor testing.
We've talked about Keytruda and Opdivo, the new drugs given to melanoma and colorectal patients with amazing success. They're related to treating microsatellite instability. It's a whole new world of medicine out there again!
In the meantime I put on a fentanyl patch for the pain, swished some GelClair and tried to gargle to reach the pain in the back of my throat. I didn't ask permission but did 'fess up to The Amazing & Wonderful Nurse Jacque. She can confer with Dr G and tell me to back off but it did hurt SO MUCH and now I feel better.
As Dr G has said from the beginning of our relationship, if I can hold on long enough there will always be something new coming down the road. Luckily for me, my indolent (i.e. lazy, slow-growing) cancer has given me almost thirteen years of life with metastatic disease.
May 06, 2015
Pain update
I spent a long, quiet week filled with discomfort and pain. Sunday's sunshine made it easier to get out, but I had noted the wrong date for my lunch. I ate anyway (I was hungry! steroids....) and then ran into a friend of a friend I hadn't seen in a long while. We had a lovely catch-up.
On Monday The Amazing & Wonderful Nurse Jacque flushed my PICC line (remember my PICC line and the old port-a-cath?). A nurse at the Swedish Wound Healing Center changed the dressing over my old port site. She also taught me how to remove and insert the special stuff they use to promote internal healing. That is really one deep hole but I think it's coming along nicely.
On Tuesday The Amazing & Wonderful Nurse Jacque gave me a shot of Neulasta. Dr G increased my fentanyl from 25 mcg to 50, then to 75, and yesterday to 100 mcg. I felt a bit woozy all day ling until I realized that not only didn't I eat breakfast, I forgot to take my morning meds, including the Cymbalta. That can really mess with you if you miss a dose. Their website says to "take the missed dose as soon as you remember. Skip the missed dose if it is almost time for your next scheduled dose. Do not take extra medicine to make up the missed dose." So I took my morning dose at 2 PM instead of 10 AM. That would surely explain my woozy feeling, on top of 100 mcg fentanyl. I did remember to take today's AM steroids in my taper-down package.
Later today I spoke to the GelClair pharmacy tech. The Amazing & Wonderful Nurse Jacque ordered it for me and the tech called to arrange delivery. They will FedEx it to my hotel in DC. Such wonderful customer service!
On Sunday, when I spoke to both Dr G and on-call oncologist Dr Z, they both seemed to think I might have thrush, so Dr Z prescribed Nystatin, an oral rinse taken four times a day (after each meal and at bedtime). The Amazing & Wonderful Nurse Jacque told me today that's not as likely given my other side effects and recommended I stop the Nystatin now. She also suggested buying some Orajel to apply on the mouth sores with a Q-tip. Rik went to the pharmacy for me and I just tried it. AMAZING! I finally have some relief from pain in my mouth. I don't know how long it will last but this is such an improvement over five minutes ago....
Why am I calling The Amazing & Wonderful Nurse Jacque so AMAZING and WONDERFUL? Because she gave me her direct line, so I could call her if I really needed her. When I didn't understand why I was both hungry and nauseous an hour ago, I called her. She re-affirmed that the steroids made me very hungry. I wasn't eating a lot anyway, because of the painful mouth sores. And that hunger can indeed cause nausea. Then I carefully held the phone away from my head and vomited a small mess of everything I'd eaten during the past hour straight into the sink: ice cream and a cheese stick. The Amazing & Wonderful Nurse Jacque first asked me if I felt better (I did) and then told me not to eat ice cream. Dairy can contribute to nausea. Who knew?
So Jacque is now officially The Amazing & Wonderful Nurse. I tell her this all the time, Now it's official.
May 03, 2015
Major Taxotere side effects
On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
 |
| Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother. |
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."
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!
July 31, 2014
Migraine
I think my jet lag is expressing itself as migraines, so I could not blog yesterday after checking the backup of email from when I was away. If not today, I will write the next day.
Otherwise I feel well, but I've never had a migraine before and it's extraordinarily painful, even for someone with my high pain tolerance - perhaps a 7 on the 1-10 scale (with my broken leg continuing as my personal "10").
I am getting labs drawn today for tomorrow's Avastin, then hope to attend my support group after. Rik is driving me, as the migraine seems to be triggered by light and the past few days have been very sunny in Seattle.
A friend gave me good advice on coping with migraines. Stay in a cool, dark, room (I'm wearing an eye shade), put a cold cloth over your head. I may try a "Well Patch," since it's an OTC item.
Read here for more on migraines.
Otherwise I feel well, but I've never had a migraine before and it's extraordinarily painful, even for someone with my high pain tolerance - perhaps a 7 on the 1-10 scale (with my broken leg continuing as my personal "10").
I am getting labs drawn today for tomorrow's Avastin, then hope to attend my support group after. Rik is driving me, as the migraine seems to be triggered by light and the past few days have been very sunny in Seattle.
A friend gave me good advice on coping with migraines. Stay in a cool, dark, room (I'm wearing an eye shade), put a cold cloth over your head. I may try a "Well Patch," since it's an OTC item.
Read here for more on migraines.
May 28, 2014
Quick catch up
I've been off Xeloda for four days, and did indeed make it through all the Folklife happenings with plenty of energy. Sadly, my hands are worse: my left thumb and forefinger in particular are peeling layers of skin, are painful and dry. Even the Neutrogena Norwegian hand cream isn't helping enough. I think I will go back to using henna tonight.
My feet are the usual ouchy from neuropathy and Hand-Foot Syndrome.
That's all. Off the take a nap!
My feet are the usual ouchy from neuropathy and Hand-Foot Syndrome.
That's all. Off the take a nap!
October 14, 2013
End of round ten
I've had ten cycles of Xeloda and am apparently still doing well, although my hands and feet are very bad right now. My hands have that burning sensation and it's hard to use them for anything in small motions, like chopping food with a knife. The webbing between the thumb and forefinger is particularly painful.
My feet are, by turns, either or both numb from neuropathy and painful from hand-foot syndrome. It's hard to walk when I first get out of bed, then it eases up, but after only a couple of hours I can't stand any longer.
I don't mean to only complain in this post, but these side effects are the realities of living with metastatic breast cancer.
My feet are, by turns, either or both numb from neuropathy and painful from hand-foot syndrome. It's hard to walk when I first get out of bed, then it eases up, but after only a couple of hours I can't stand any longer.
I don't mean to only complain in this post, but these side effects are the realities of living with metastatic breast cancer.
June 21, 2013
What Hand-Foot Syndrome looks like
 |
| Left hand |
 |
| Right hand |
You can see every line in my hands. The redness doesn't photograph well but occurs at every fingertip and in the webbing between the fingers, especially between thumb and index fingers. This is what Hand-Foot Syndrome, a side effect of Xeloda, looks like.
 |
| Right heel: see how cracked and red? Plus a spot where skin is peeling off. Ouch! |
Hand-Foot Syndrome
Xeloda's Hand-Foot Syndrome side effect has really got me these days. Today is the last day of 14 when I actually take the drugs, then I get a week off. The problem is that the pain in my palms and soles has gotten much worse over the last couple of days. It was so bad last night that I had to skip the first synagogue board meeting of the new year. I couldn't stand, couldn't walk, could hardly sit without discomfort. My hands are bad enough that it's tough to open a jar or turn off a lamp switch.
Both my palms and soles have peeling skin and all the lines that you normally don't see are visible. I have some cracks in my soles as well as some peeling skin.
H-F S happens when the chemo leaves a body. Normally that takes place via urination, but in the case of Xeloda and some other chemos, it leaves the body via the palms and soles, causing burns as though from the inside out. And the ongoing neuropathy in my toes doesn't help either.
I'll try to get Rik to take some photos so you can see what I'm talking about. In the meantime, maybe a piece of that MMJ brownie might help....
Both my palms and soles have peeling skin and all the lines that you normally don't see are visible. I have some cracks in my soles as well as some peeling skin.
H-F S happens when the chemo leaves a body. Normally that takes place via urination, but in the case of Xeloda and some other chemos, it leaves the body via the palms and soles, causing burns as though from the inside out. And the ongoing neuropathy in my toes doesn't help either.
I'll try to get Rik to take some photos so you can see what I'm talking about. In the meantime, maybe a piece of that MMJ brownie might help....
 |
| This is my right foot. Note the red areas on the heel and ball of the foot. Ouch! |
November 15, 2012
Good news
The eribulin is clearly working. My CA 27.229 tumor marker fell by more than 100 points! This is exactly the kind of reaction Dr G and I hoped to see.
The next step will be to reduce the eribulin dose once more (to the lowest of the three options), because the neuropathy in my feet has increased dramatically. In the morning I now feel numb all along the toes, the balls of the feet, and the outside edges of each foot. (Previously I didn't have any symptoms in the morning.) By 4 PM I have that pins-and-needles feeling, which soon progresses to full numbness and more pain by evening. Hence Dr G wants to try reducing the dosage to see if the eribulin will still be as effective but less toxic. I agreed to try for one more cycle.
Also, today is my 53rd birthday. Rik bought me red roses, Bob snuggled with me, and I managed to do a little shopping. But what did I really do today? Go to the doctor and get good news!
I'm already looking forward to turning 54.....
The next step will be to reduce the eribulin dose once more (to the lowest of the three options), because the neuropathy in my feet has increased dramatically. In the morning I now feel numb all along the toes, the balls of the feet, and the outside edges of each foot. (Previously I didn't have any symptoms in the morning.) By 4 PM I have that pins-and-needles feeling, which soon progresses to full numbness and more pain by evening. Hence Dr G wants to try reducing the dosage to see if the eribulin will still be as effective but less toxic. I agreed to try for one more cycle.
Also, today is my 53rd birthday. Rik bought me red roses, Bob snuggled with me, and I managed to do a little shopping. But what did I really do today? Go to the doctor and get good news!
I'm already looking forward to turning 54.....
July 09, 2012
Mouth sore
The Afinitor has mostly been very tolerable. I've had a few side effects, but each disappeared after a day or so. So I'm unhappy to have one persistent mouth sore on the edge of my tongue for the past few days. It's in the just the right place to touch against my teeth repeatedly, while talking or eating, both of which I love to do! This has been going on since Friday.
I'm managing the discomfort with Vicodin for the pain and a home-made mouth rinse of baking soda and salt to speed healing. My naturopath says there has to be enough salt in the rinse to feel a stinging sensation in the sore. Uggh. Hope this helps!
I'm managing the discomfort with Vicodin for the pain and a home-made mouth rinse of baking soda and salt to speed healing. My naturopath says there has to be enough salt in the rinse to feel a stinging sensation in the sore. Uggh. Hope this helps!
March 23, 2012
More on kidney stones
I had severe back pain again last night, the kind that wakes you up at 3 AM. It was accompanied by nausea, although I did not vomit. I got out of bed, took 1.5 hydrocodone tabs, and tried another Lomotil. The pain eventually went away but I didn't sleep too well.
I just did a little research on kidney stones and found the following articles:
PubMed Health on kidney stones
Medline Plus on self care
NIDDK's What I need to know about Kidney Stones
There are four kinds of kidney stones. Uric acid - what Dr G suspects - is one kind. Clearly we have to determine which kind I have.
I am trying to drink more water. Some sources say 6-8 glasses a day. One said 12! I have a call in to my primary care doc, in case she wants to order particular tests on Monday. I wish I'd thought of that yesterday -- she's not in on Fridays. Her nurse is supposed to call back.
Yet another thing to add to my dance with cancer...
I just did a little research on kidney stones and found the following articles:
PubMed Health on kidney stones
Medline Plus on self care
NIDDK's What I need to know about Kidney Stones
There are four kinds of kidney stones. Uric acid - what Dr G suspects - is one kind. Clearly we have to determine which kind I have.
I am trying to drink more water. Some sources say 6-8 glasses a day. One said 12! I have a call in to my primary care doc, in case she wants to order particular tests on Monday. I wish I'd thought of that yesterday -- she's not in on Fridays. Her nurse is supposed to call back.
Yet another thing to add to my dance with cancer...
March 22, 2012
Kidney stone update
My kidney pain has returned. On Tuesday night I was uncomfortable but didn't take any pain meds, just thought I might have heartburn (from eating too much dinner at a friend's house) and a sore back. I did not make a connection to last week at all, but these were the same symptoms. It took me until 3 AM to understand that I had real pain, the kind that stops you in your tracks. Other people feeling this level of pain might have gone to the ER even in the middle of the night. At least that's what other people with kidney stones have told me they did. Not yours truly. I have real pain meds right here. I grabbed the glass of water on the night stand and swallowed a hydrocodone pill. When that didn't take effect, I downed a second dose. Within 30 minutes my pain was gone and I felt very dreamy indeed.
Relief from the 3 AM pain meds lasted until noon Wednesday, when my back pain returned. So I started taking the ibuprofen which Dr G had recommended. That was fine until today. By 1 PM today, taking 400 mg of ibuprofen every eight hours was no longer enough medication.
The SCCA folks weren't interested in managing my kidney issue. They said to talk to Dr G or my regular doctor.
While waiting for my Xgeva shot today (the monthly bone strengthener), I asked if Dr G could stop by. He gave ma an actual "you poor baby," and told me I could increase the ibuprofen and take hydrocodone. He also had researched that atropa belladonna helps kidney spasm pain. So Dr G prescribed Lomitil, which contains belladonna. (Must be the stropping in the mix.) Dr G was pleased that I recalled form my high school Latin that bella donna means beautiful lady. He also seemed a bit irked that SCCA, which had originally insisted they would handle everything while I was on the clinical trial, wouldn't step forward to address the kidney concern.
I took some ibuprofen and a dose of Lomitil, and it kept me pain-free all afternoon. But now I can feel the beginning of some pain tweaks, so I am going to take some more ibuprofen and hope that carries me until bed time.
I will see my regular family practice doctor for an annual physical on Monday, and she can take over managing the kidney thing. Dr G is my oncologist, whose job is to treat my cancer. It says a lot about his commitment to patient care that he is more than willing to treat anything that comes up.
March 19, 2012
Kidney stones
The answer to the tummy pain etc. appears to be kidney stones!
Dr G says that given my recent improved PET scan, this is the likely scenario. When tumor cells die, they produce uric acid. This settles in the kidneys and forms stones.
My symptoms and areas of pain match the clinical diagnosis of kidney stones. The clincher was when I described yesterday's pain and held my hand over the lower left side of my abdomen -- the stone passing?
I also awoke this morning with much less pain which has now dwindled away to almost nothing.
Today's ultrasound did not show a stone, and since my pain is gone, that also points to kidney stones as the culprit.
Dr G posted his diagnosis in my electronic patient record at the U, and sent email to Dr Gadi as well. I haven't heard back from SCCA yet.
This is why I so love Dr G. He thinks outside the box on a regular basis.
Dr G double checked himself on all of the above, and then prescribed NSAIDs instead of opiates for pain (400 mg of ibuprofen three times a day if needed).
Whee!
March 18, 2012
Achy belly
Since last Sunday I've had aches in or near my belly, constipation, gas, bloating, pain in my (left) side and along my back, and a weight gain of three pounds. After several sleepless nights, and a recommendation from Dr G's office that I call SCCA first, I finally got through to Dr Gadi's nurse on Friday. (Although someone checks her voice mail on Thursdays when A is not in the office, it turns out that whoever does so only returns urgent calls. I guess I didn't sound sufficiently urgent on my two messages).
A was pleasant on the phone and said she'd tell Dr Gadi about my symptoms. At around 1PM Friday she returned my call and asked if I could come in to SCCA, have some blood drawn for labs, and then wait for the results. Since I was already on Capital Hill, I did so.
The lab was extremely busy and I waited more than thirty minutes to have my port accessed. I waited about an hour for the lab results. A spent some time with me, talked through my symptoms again, did a brief physical exam, and told me that my belly was soft, my bowels sounded fine, and that my labs had all improved since my previous visit. Not only that, but she printed out my PET scan reports and each area of concern regarding tumor uptake of glucose injection had improved since the last scan. The only difference in my situation since my previous visit with Dr Gadi was that I had started Femara (letrozole). He prescribed generic letrozole, which may be a culprit in my discomfort.
I waited again while A talked to Dr Gadi. Their best recommendation was to take a baseline measurement of my rib cage and belly on Friday when I got home, take another measurement over the weekend, and see if anything had changed. Dr Gadi also wanted me to have an ultrasound of the area, and since it was already 3:30 on Friday afternoon, A didn't think she could get me scheduled for that same day. I already have an appointment on Monday to see Dr G, so at my request, A spoke to Dr G's nurse, who was able to order an ultrasound for 6:45 AM Monday. (Oy. I am so not an early riser.)
I felt well enough to cook dinner for our guests Friday night. But after getting into bed I was restless with discomfort, so much so that even with Ativan and Vicodin I gave up trying to sleep at 2:30 AM. I got out of bed, made a nest on the sofa, half sitting and half lying down, and eventually fell sleep. Rik got up with the dog at 7:30 and I crawled into bed, where I stayed until after 10:00.
I sat around the house all day Saturday, trying to relax my belly and back. I nibbled on a cracker, drank some soup, and ate the remains of Friday night's salad. So far today I've managed to eat a small piece of French toast and a couple of bites of fruit. I even went for a walk with Rik. But I am still bloated, my belly and back still hurt, and my weight is still up from normal.
The point of tomorrow's ultrasound is to check for ascites, an accumulation of fluid in the abdominal cavity. If I have this, it likely relates to liver metastases. But based on last week's scan my liver has improved, and my lab results from Friday say the same thing.
I think all I can do is hope that somehow my discomfort is due to that generic letrozole, that one of my doctors will recommend changing to the brand name drug, and that the insurance company will approve it even though I still have three weeks' supply remaining of the generic drug. I really can't face three weeks of not sleeping well, belly aches, etc.
Otherwise, who knows what might be happening?
A was pleasant on the phone and said she'd tell Dr Gadi about my symptoms. At around 1PM Friday she returned my call and asked if I could come in to SCCA, have some blood drawn for labs, and then wait for the results. Since I was already on Capital Hill, I did so.
The lab was extremely busy and I waited more than thirty minutes to have my port accessed. I waited about an hour for the lab results. A spent some time with me, talked through my symptoms again, did a brief physical exam, and told me that my belly was soft, my bowels sounded fine, and that my labs had all improved since my previous visit. Not only that, but she printed out my PET scan reports and each area of concern regarding tumor uptake of glucose injection had improved since the last scan. The only difference in my situation since my previous visit with Dr Gadi was that I had started Femara (letrozole). He prescribed generic letrozole, which may be a culprit in my discomfort.
I waited again while A talked to Dr Gadi. Their best recommendation was to take a baseline measurement of my rib cage and belly on Friday when I got home, take another measurement over the weekend, and see if anything had changed. Dr Gadi also wanted me to have an ultrasound of the area, and since it was already 3:30 on Friday afternoon, A didn't think she could get me scheduled for that same day. I already have an appointment on Monday to see Dr G, so at my request, A spoke to Dr G's nurse, who was able to order an ultrasound for 6:45 AM Monday. (Oy. I am so not an early riser.)
I felt well enough to cook dinner for our guests Friday night. But after getting into bed I was restless with discomfort, so much so that even with Ativan and Vicodin I gave up trying to sleep at 2:30 AM. I got out of bed, made a nest on the sofa, half sitting and half lying down, and eventually fell sleep. Rik got up with the dog at 7:30 and I crawled into bed, where I stayed until after 10:00.
I sat around the house all day Saturday, trying to relax my belly and back. I nibbled on a cracker, drank some soup, and ate the remains of Friday night's salad. So far today I've managed to eat a small piece of French toast and a couple of bites of fruit. I even went for a walk with Rik. But I am still bloated, my belly and back still hurt, and my weight is still up from normal.
The point of tomorrow's ultrasound is to check for ascites, an accumulation of fluid in the abdominal cavity. If I have this, it likely relates to liver metastases. But based on last week's scan my liver has improved, and my lab results from Friday say the same thing.
I think all I can do is hope that somehow my discomfort is due to that generic letrozole, that one of my doctors will recommend changing to the brand name drug, and that the insurance company will approve it even though I still have three weeks' supply remaining of the generic drug. I really can't face three weeks of not sleeping well, belly aches, etc.
Otherwise, who knows what might be happening?
March 09, 2012
To hospice and when
This is an issue that every patient with advanced cancer faces at some point. When will I know that I've had enough treatment, that my life would be better spent with hospice support, pain management and no more crappy chemo side effects?
I'm not in this place of deciding now, but I know it's coming some day.
Read the full, great article here.
I'm not in this place of deciding now, but I know it's coming some day.
Why Doctors Die Differently
By Ken Murray
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. It was diagnosed as pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient's five-year-survival odds—from 5% to 15%—albeit with a poor quality of life.
What's unusual about doctors is not how much treatment they get compared with most Americans, but how little.
Charlie, 68 years old, was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He focused on spending time with his family. Several months later, he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn't spend much on him.
It's not something that we like to talk about, but doctors die, too. What's unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently....
Read the full, great article here.
Subscribe to:
Posts (Atom)
Posts
