Logging for a few days.
So. PET scan was fine on Thursday.
Work was fine most on Friday.
I was up most of the night Friday/Saturday.
I swallowed one pill and began coughing/vomiting and couldn't stop all day. Drank tea. Took allergy medicine... meh.
After going thru that, I wasn't thrilled with Saturday. Received a new anti-nausea med I take every 6 hours now. Sunday morning at 1:30 am I started coughing up blood along with mucus. Very disconcerting. This hasn't really ended yet... yuck.
Went to the dr.
Got two bags of fluid.
They didn't know what to do with me.
I had terrible sleep. Couldn't stop panic breathing where everytime I laid down I'd go into this breathing issue. Still an issue during the daytime.
Called to beg to see my oncologist Monday since I had a sub but she's been on holiday so she actually couldn't squeeze me in since she wants quality conversation time about the PET scan. So tomorrow I go.
PET SCAN results... 30 minute wait while my oncologist reviewed results, could have been good or bad, or both. Yep, both. Received "Mixed Results".
The one good: the tumor on my adrenal gland that was discovered in July shrunk a load, she was happy.
The other things, not so happy.
We did decide to stay the course.
I'll try my best to share what's the worrisome stuff:
1. Might have pneumonia, will get an antibiotic, likely liquid, tomorrow.
2. Mediastintum where I've been radiated/have tumor/been fighting/been cut up/operated there, etc.... is growing, more active. Plus found a new tumor area near the mass.
3. Abdomen hasn't been brought up before... could be cancer in there in the lower right quadrant, hmm.
4. Could also be peritoneal disease which is not something new for cervical cancer patients...
5. I have what's called a "Mixed Response" overall to the Nivolumab.
She also mentioned that she just got back from a conference where they discussed these checkpoint inhibitors, like Nivolumab, and how they're just not as straightforward as we'd like... and to stay the course and be patient. Guess I can do this.
She also mentioned that there sometimes are "pseudo progressors" which also she said might signal that we need to give more time.
Well, plugging away, going to be a little quiet and introspective now... Staying positive as I can. Resting where I find time. Working to get better sleep, here's hoping.
Wishing everyone well,
Thanks for journeying with me.
2 more months I'm going to stay this course, shall see. Every other week Nivolumab I believe, shall see!...
Showing posts with label patience. Show all posts
Showing posts with label patience. Show all posts
Tuesday, December 15, 2015
Wednesday, November 19, 2014
Reflecting patiently, calmly
I've been thinking recently about my energy, or lack thereof.
It is ridiculously frustrating to be so tired that when I go brush my teeth I have to sit down on the floor so that I'm not shaking... (On my worst days...)
I'm a high energy type of person. I love to dance, Zumba, work hard, play hard, and enjoy life...
I chatted with my husband the other day about this. Told him how tired I was of how me being weak is the new norm. He reminded me that it is temporary. Is it? I've been told many times that I'm not ever going to be my normal self again after this third cancer diagnosis. I look back at my past life. Think about the gym we joined half a year ago that I haven't been to since August. Think about what I'm missing at work as kids grow up and get library time without me...
It is quite frustrating. I think back to years ago when a normal day included teaching, masters class, and salsa dancing... so different now.
But then I think about how I've changed already.
I'm more open to new treatments beyond acupuncture.
I certainly have learned to ride the waves of energy/lack, etc... read signs for medication needs, dealt with not fun side effects, etc. I know how lucky I am because I'm not curled up in the corner of my bathroom wimpering as I've read others have experienced at times with chemo side effects.
I'm exploring pulling, essential oils, dietary changes, energy healing, Qigong, chanting and more.
I was told by my friend yesterday who is an energy healer that she's impressed with how open I am to energy. How calm I was during the treatment. Asked me if I've always been a calm person... I've always had a good wall up that calms me during stressful situations. Hmm. I have always been able to distance myself when there are tough things confided and help others simply by listening, is this that calm?
Did I learn to be calm somewhere?
I certainly can be calm for hours while reading. Or working on my computer. Hmm.
Did I learn to be calm during radiation treatments? Laying still even with nose itches, side pain, awkward positions because I didn't want the radiation going to the wrong place... was it a form of meditation?
I'm hit or miss on the sleeping scheme, that's how I know I'm still my normal self in a way... but I'm grateful for how I've changed in other ways. I'm certainly braver and more patient when it comes to needles and such... I'm also learning to speak up for myself and ask when I need something. Reaching out to others is less of a challenge than it was in the past.
Dealing with the days.
Happy because my kiddo is home from 2-night camp adventure with classmates which he LOVED and enjoyed learning about kayaking and dragon boating and more... lucky kiddo. My sweet dog will be picked up soon from her surgery and I can't wait to have her back as well.
Thanks for journeying with me- even on my rambling days...
It is ridiculously frustrating to be so tired that when I go brush my teeth I have to sit down on the floor so that I'm not shaking... (On my worst days...)
I'm a high energy type of person. I love to dance, Zumba, work hard, play hard, and enjoy life...
I chatted with my husband the other day about this. Told him how tired I was of how me being weak is the new norm. He reminded me that it is temporary. Is it? I've been told many times that I'm not ever going to be my normal self again after this third cancer diagnosis. I look back at my past life. Think about the gym we joined half a year ago that I haven't been to since August. Think about what I'm missing at work as kids grow up and get library time without me...
It is quite frustrating. I think back to years ago when a normal day included teaching, masters class, and salsa dancing... so different now.
But then I think about how I've changed already.
I'm more open to new treatments beyond acupuncture.
I certainly have learned to ride the waves of energy/lack, etc... read signs for medication needs, dealt with not fun side effects, etc. I know how lucky I am because I'm not curled up in the corner of my bathroom wimpering as I've read others have experienced at times with chemo side effects.
I'm exploring pulling, essential oils, dietary changes, energy healing, Qigong, chanting and more.
I was told by my friend yesterday who is an energy healer that she's impressed with how open I am to energy. How calm I was during the treatment. Asked me if I've always been a calm person... I've always had a good wall up that calms me during stressful situations. Hmm. I have always been able to distance myself when there are tough things confided and help others simply by listening, is this that calm?
Did I learn to be calm somewhere?
I certainly can be calm for hours while reading. Or working on my computer. Hmm.
Did I learn to be calm during radiation treatments? Laying still even with nose itches, side pain, awkward positions because I didn't want the radiation going to the wrong place... was it a form of meditation?
I'm hit or miss on the sleeping scheme, that's how I know I'm still my normal self in a way... but I'm grateful for how I've changed in other ways. I'm certainly braver and more patient when it comes to needles and such... I'm also learning to speak up for myself and ask when I need something. Reaching out to others is less of a challenge than it was in the past.
Dealing with the days.
Happy because my kiddo is home from 2-night camp adventure with classmates which he LOVED and enjoyed learning about kayaking and dragon boating and more... lucky kiddo. My sweet dog will be picked up soon from her surgery and I can't wait to have her back as well.
Thanks for journeying with me- even on my rambling days...
Saturday, October 11, 2014
That question: What are good things about cancer? Chemotherapy?
 |
| Just can not fully smile at chemotherapy... Every week I take a picture and look like this. Friends told me it was my "determined" look... I'll take that. Sounds better than grouchy, right? |
A little bit ago a good friend asked me to reflect on cancer and what the positives were of having it. Honestly, cancer totally sucks. But I can try to find the 'silver linings' of cancer... I certainly appreciate life more. I've learned many new things. I learned about how to be a better friend, wife, mom and person. I learned how to prioritize my needs and celebrate success before I move to the next project. I learned how to give myself a break and appreciate myself. I learned about Qigong, mindfulness, pulling, and more healthy practices. I learned to be responsible for myself by creating an id tag with contact numbers and chemotherapy drugs listed on it so that if there is an emergency, I have it there ready to point at. I hope I'll continue growing as a person and survive for many many years to come without the need for my body to add any more cancer crisis situations in.
Last year in November when I was finishing my first experience with radiation treatment I began a list of positives dealing with radiation. I continued adding to that list of positives in May when I was getting radiation treatment for breast cancer. I tried to have a little humor and looked for the positives... I like looking over this list even though I dread dealing with radiation again after chemotherapy finishes this time. Shall see...
http://lifesjourneyinterrupted.blogspot.hk/2014/08/positives-about-radiation-list.html
I went in for my fourth chemotherapy session in the morning. 1/3 of the way through. I gained weight, again! Was so exciting, did a happy dance. My oncologist told me he liked my facial color and thought I was doing well, besides the side effects. But, I'm not enjoying chemotherapy, all three drugs go in again next week and I know that I've had a harder reaction with the three combined and that this week was really the peak of my recovery from that first round. I'm not thrilled to see how my body is freaking out with bloody noses, scalp shedding hair, nausea, crap immune system, and fatigue/weakness slowing me down. I do appreciate that I'm learning how to better listen to my body. That's a really good thing but honestly, I don't feel like I ever abused my body. I enjoyed exercise- especially dancing, ate mostly healthy (chocolate and sweets admitted), and have always been a pretty positive person... Hmm. Just not so lucky with TWO cancers that wreak havoc on my body.
Here's the beginning list of what are mostly positives about chemotherapy:1. You can see an oncologist frequently and receive instant answers to questions.
2. You get 1:1 attention with nurses and more.
3. There are mostly good anti-nausea medications that help.
4. Sometimes you don't lose your appetite throughout the whole week.
5. You certainly have a chance to lose weight depending on medication and reactions...
6. New routines are adopted such as gargling, pulling, etc.
7. You become keenly self aware of your body and organized logging your medicine intake and reactions to chemotherapy.
8. You get new social resouces such as CancerLink here in Hong Kong.
9. Short hair revelations- can live with it and probably handle being bald.
10. You can play a guessing game about where the chemo will go into your hand each week. Sometimes there are some angles and different veins chosen!
11. You are forced to slow down, not a terrible thing to be given that time.
12. Sitting quietly can be peaceful.
13. You might find more interesting reading material and learn quite a bit about chemotherapy, drugs you're getting, and more.
14. There is an end in sight, it is possible to get through this, day by day.
15. Learn that you can ask for help and get it even from strangers if you faint on the MTR.
16. People in the chemotherapy room can empathize with your situation.
17. You can see yourself like a science experiment and try out multiple experiments to help heal yourself.
18. Learn about different friends strengths who can help out... and learn how to ask for help.
19. You value time with friends and family and learn again about prioritizing.
20. You feel no guilt when eating and prioritizing weight gain. *Funny to be excited about gaining weight!
That's the random mix I have so far on chemotherapy, it is possible to find positives, even if I'd never in a million years want anyone to deal with it themselves.
I'm grateful, growing, learning, and appreciating life... one day at a time. Thanks for journeying with me...
Wednesday, September 17, 2014
Ambulance, surgeons, wigs, police, and more
Presently, I'm quite glad that I have a fully booked week. It is helpful to distract myself at the present time.
I enjoyed free time yesterday in the morning with my son and husband when there was the T8 (typhoon level 8) warning hoisted. Eventually my husband had to head to work and the kiddo and I had an appt to get x-rays and sutures out at the surgeon's office.
Working on my patience:
I've noticed that my patience is wearing thin when I have to talk with medical people on the phone. It helps to remind myself that it is a short time period that I have to deal with it and "this too shall pass". Sometimes I think these complications are good for me to work on my patience skills, breathing skills, and communication skills... Reminding myself how many people these individuals talk to is also helpful- if I'm kind/nice, will help other patients out.
For example:
On Monday afternoon, I got a call from my surgeon's office. They wanted to change my Tuesday appointment time from 3:45 to 2pm. Well, that was confusing as the appointment they wrote down for me was at 11am one week before. After sorting it out, I was grateful that the appointment was at 2pm since there was that T8 that came in and had most everything closed in the morning. They called two hours later to confirm the appointment that they called earlier about and took quite a bit of time clarifying everything, I grew impatient about this since I already talked with them two hours before about the same thing. Also, I was told to go at 1:30 to get an x-ray of my lungs done at another location. When I got there at 1:05, the office was closed for lunch from 1-2pm. I chuckled, called the surgeon's office, and was told to wait til 2 and then come over immediately after... It all works out. I was able to cross the street and hang out at a favorite bookstore and had unexpected relaxing time.
Surgeon time:
Visiting with my surgeon was ok. He's quite pleased with me and my progress and is now "done" with me. Good guy, talented surgeon. Asked me about new diagnosis and when I mentioned how my oncologist said that the chemo/radiation only had a 40-50% predicted success rate, he simply said "try to be more positive, I've seen patients like you before successfully battle cancer and live for a long time." I explained to him how I was staying darn positive but that he asked about the diagnosis and I was simply filling him in... but I appreciate his positive support. He gave me some ointment for the three scars, removed the final three sutures, and sent me away with many instructions. Really glad that he's happy with the progress and also grateful to be finished visiting yet another doctor. Must mention, I can recognize myself now by x-ray. Since that lower right lobe of my lung was taken out, my x-rays look quite odd. Interesting to see the changes already in three weeks since the surgery.
So, working on my skills, taking deep breaths and more...
Qigong:
At the end of the day I was able to have some lovely women over and have a class in Qigong, reminded me of Tai Chi with deeper breathing and energy focus. I'm so happy that this will be a weekly occurance, just wish I'd started this up years ago... Complimentary to yoga. I put a few YouTube videos with Qigong exercises on that page to the right of this blog post called Healthy Practice Videos to Visit.
I'm happy that I got preregistered for a yoga class and chanting class thru CancerLink. Those will start in October. Hope I have energy to go to them every week... will be healthy outlets I think.
So... appreciated accomplishments for the day.
Hair- I like touching it, soft and all that but when I look in the mirror I'm not so fond of it yet... but I'll adjust. Have had many supportive friends tell me how much they like it.
Insurance fun (NOT):
Today I met with my school foundation's human resources representative about insurance coverage. She was reassuring but I didn't receive any definitive answers... what a surprise. I have paperwork requests I'm setting up for back-up insurance and more. Shall see. Grateful there's someone supporting me there.
Overwhelming packages:
Received the prettiest hats and scarves in the mail today. Thank you to my lovely friend for passing them to me. Shall picture model soon enough. This afternoon I went to CancerLink to meet with the wig specialist to learn a little about wigs and also find out about how to wear scarves. I was really thrown trying on different wigs. Really thrown. Didn't recognize myself and wasn't so thrilled. But the woman was so kind and patient. I borrowed a wig... it is ok. Plus I received a nice pink hat and an odd skull covering for keeping me warm, protecting me from itchy wigs, and when my hair starts falling out I have another odd head covering that helps me avoid hair falling all over when the chemo effects begin...
Yesterday a friend also passed me her turban/scarves that were created for cancer patients. I'm happy I have multiple options, a good thing.
Began crying (crying is ok) this afternoon when a care package arrived from some of my beloved librarian friends from Beaverton, Oregon. Working with them was incredible over the years... dear friends... Really touched to receive so many special letters, treats, personalized gifts, and much more... I have many things to use for chemo treatments and many special things to boost my spirits. Really really overwhelmed by that box of special gifts, thoughts, and love.
*I just read in Crazy Sexy Cancer Tips by Kris Carr about how I should create a quiet place to go each day. She had one corner of her home with a cushion, candles, and things that inspired her... Think some of the care package gifts will be there.
Ambulance and Local Hospital Experience:
Tonight was a little tumultuous. Our live-in helper (my lifeline for almost everything) collapsed in pain after dinner, we're not sure why, and we called an ambulance. I rode with her to the hospital. She felt a little better after 45 minutes but then we waited an hour and a half before she was released... she has to go to the doctor tomorrow. I suspect she has kidney stones but also she's had other issues in the past and usually it is food related. While we waited for the ambulance to show up, my husband quickly zipped out to take our dog for a walk. He went to a local money exchange place and when he talked to the person about getting Vietnamese dong. The person tried to give him a poor exchange rate and then refused to give him back his money. He called the police and the person gave back money right before the police showed up... He filed a complaint. Our son was over at our wonderful neighbor-friends in the same apartment complex... Thank goodness we have friends to lean on that have a kiddo his age. He was happy to hang out with his friend.
I got home with my helper at 10pm. Glad she got care, medicine, and is now resting. Scary to see someone you care about in pain, curled up... Appreciate that an ambulance ride and emergency room care total $100 Hong Kong Dollars- that's $12 USD. In the US how much would it be? Crazytown costly, I know... But I didn't feel like the ER doctors were really knowledgeable. You must be your own advocate there. I noticed that my helper spoke up and got a referral letter so that she could go see a regular doctor... That was my first experience in an ambulance in Hong Kong (or ever for that matter) and also in a local hospital. I've been in four private hospitals here in Hong Kong for procedures. I tell you, drastic difference. I was quite entertained people watching for two hours- drunk people, vomiting people, broken ankle people, and more... did I mention I asked for a face mask immediately?
Marathon man:
So, why was my wonderful husband getting Vietnamese dong? He's going away! Tomorrow! For 5 days! I'm getting my first chemo treatment right in the middle of the time he's away! But I refused for him to cancel anything. He is a marathon person, one thing we'll never share beyond my support for him. He's going to Vietnam to participate in the Vietnam Mountain Marathon. Running. A marathon. In the mountains. Seriously. This is like his birthday present to himself since that's coming up the day after he returns. Curious? Here's a link to his adventure:
http://vietnammountainmarathon.com/the-challenge/
Really happy we live in a place that gives him a chance to run marathons like this. He's done marathons for a long long long time... and I admire his tenacity. Shall miss him a tremendous amount while he's gone though!
Tomorrow? Trying out a new acupuncturist. Crossing my fingers he works out for me... Have had some not-so-fabulous experiences so far here... they are expensive appointments. Want it to be worth it.
Enjoyed watching this video, interesting study: Cell Nutritionals: Pomi-T Study - https://www.youtube.com/watch?v=383bzFpwJ0k
I enjoyed free time yesterday in the morning with my son and husband when there was the T8 (typhoon level 8) warning hoisted. Eventually my husband had to head to work and the kiddo and I had an appt to get x-rays and sutures out at the surgeon's office.
Working on my patience:
I've noticed that my patience is wearing thin when I have to talk with medical people on the phone. It helps to remind myself that it is a short time period that I have to deal with it and "this too shall pass". Sometimes I think these complications are good for me to work on my patience skills, breathing skills, and communication skills... Reminding myself how many people these individuals talk to is also helpful- if I'm kind/nice, will help other patients out.
For example:
On Monday afternoon, I got a call from my surgeon's office. They wanted to change my Tuesday appointment time from 3:45 to 2pm. Well, that was confusing as the appointment they wrote down for me was at 11am one week before. After sorting it out, I was grateful that the appointment was at 2pm since there was that T8 that came in and had most everything closed in the morning. They called two hours later to confirm the appointment that they called earlier about and took quite a bit of time clarifying everything, I grew impatient about this since I already talked with them two hours before about the same thing. Also, I was told to go at 1:30 to get an x-ray of my lungs done at another location. When I got there at 1:05, the office was closed for lunch from 1-2pm. I chuckled, called the surgeon's office, and was told to wait til 2 and then come over immediately after... It all works out. I was able to cross the street and hang out at a favorite bookstore and had unexpected relaxing time.
Surgeon time:
Visiting with my surgeon was ok. He's quite pleased with me and my progress and is now "done" with me. Good guy, talented surgeon. Asked me about new diagnosis and when I mentioned how my oncologist said that the chemo/radiation only had a 40-50% predicted success rate, he simply said "try to be more positive, I've seen patients like you before successfully battle cancer and live for a long time." I explained to him how I was staying darn positive but that he asked about the diagnosis and I was simply filling him in... but I appreciate his positive support. He gave me some ointment for the three scars, removed the final three sutures, and sent me away with many instructions. Really glad that he's happy with the progress and also grateful to be finished visiting yet another doctor. Must mention, I can recognize myself now by x-ray. Since that lower right lobe of my lung was taken out, my x-rays look quite odd. Interesting to see the changes already in three weeks since the surgery.
So, working on my skills, taking deep breaths and more...
Qigong:
At the end of the day I was able to have some lovely women over and have a class in Qigong, reminded me of Tai Chi with deeper breathing and energy focus. I'm so happy that this will be a weekly occurance, just wish I'd started this up years ago... Complimentary to yoga. I put a few YouTube videos with Qigong exercises on that page to the right of this blog post called Healthy Practice Videos to Visit.
I'm happy that I got preregistered for a yoga class and chanting class thru CancerLink. Those will start in October. Hope I have energy to go to them every week... will be healthy outlets I think.
So... appreciated accomplishments for the day.
Hair- I like touching it, soft and all that but when I look in the mirror I'm not so fond of it yet... but I'll adjust. Have had many supportive friends tell me how much they like it.
Insurance fun (NOT):
Today I met with my school foundation's human resources representative about insurance coverage. She was reassuring but I didn't receive any definitive answers... what a surprise. I have paperwork requests I'm setting up for back-up insurance and more. Shall see. Grateful there's someone supporting me there.
Overwhelming packages:
Received the prettiest hats and scarves in the mail today. Thank you to my lovely friend for passing them to me. Shall picture model soon enough. This afternoon I went to CancerLink to meet with the wig specialist to learn a little about wigs and also find out about how to wear scarves. I was really thrown trying on different wigs. Really thrown. Didn't recognize myself and wasn't so thrilled. But the woman was so kind and patient. I borrowed a wig... it is ok. Plus I received a nice pink hat and an odd skull covering for keeping me warm, protecting me from itchy wigs, and when my hair starts falling out I have another odd head covering that helps me avoid hair falling all over when the chemo effects begin...
Yesterday a friend also passed me her turban/scarves that were created for cancer patients. I'm happy I have multiple options, a good thing.
Began crying (crying is ok) this afternoon when a care package arrived from some of my beloved librarian friends from Beaverton, Oregon. Working with them was incredible over the years... dear friends... Really touched to receive so many special letters, treats, personalized gifts, and much more... I have many things to use for chemo treatments and many special things to boost my spirits. Really really overwhelmed by that box of special gifts, thoughts, and love.
*I just read in Crazy Sexy Cancer Tips by Kris Carr about how I should create a quiet place to go each day. She had one corner of her home with a cushion, candles, and things that inspired her... Think some of the care package gifts will be there.
Ambulance and Local Hospital Experience:
Tonight was a little tumultuous. Our live-in helper (my lifeline for almost everything) collapsed in pain after dinner, we're not sure why, and we called an ambulance. I rode with her to the hospital. She felt a little better after 45 minutes but then we waited an hour and a half before she was released... she has to go to the doctor tomorrow. I suspect she has kidney stones but also she's had other issues in the past and usually it is food related. While we waited for the ambulance to show up, my husband quickly zipped out to take our dog for a walk. He went to a local money exchange place and when he talked to the person about getting Vietnamese dong. The person tried to give him a poor exchange rate and then refused to give him back his money. He called the police and the person gave back money right before the police showed up... He filed a complaint. Our son was over at our wonderful neighbor-friends in the same apartment complex... Thank goodness we have friends to lean on that have a kiddo his age. He was happy to hang out with his friend.
I got home with my helper at 10pm. Glad she got care, medicine, and is now resting. Scary to see someone you care about in pain, curled up... Appreciate that an ambulance ride and emergency room care total $100 Hong Kong Dollars- that's $12 USD. In the US how much would it be? Crazytown costly, I know... But I didn't feel like the ER doctors were really knowledgeable. You must be your own advocate there. I noticed that my helper spoke up and got a referral letter so that she could go see a regular doctor... That was my first experience in an ambulance in Hong Kong (or ever for that matter) and also in a local hospital. I've been in four private hospitals here in Hong Kong for procedures. I tell you, drastic difference. I was quite entertained people watching for two hours- drunk people, vomiting people, broken ankle people, and more... did I mention I asked for a face mask immediately?
Marathon man:
So, why was my wonderful husband getting Vietnamese dong? He's going away! Tomorrow! For 5 days! I'm getting my first chemo treatment right in the middle of the time he's away! But I refused for him to cancel anything. He is a marathon person, one thing we'll never share beyond my support for him. He's going to Vietnam to participate in the Vietnam Mountain Marathon. Running. A marathon. In the mountains. Seriously. This is like his birthday present to himself since that's coming up the day after he returns. Curious? Here's a link to his adventure:
http://vietnammountainmarathon.com/the-challenge/
Really happy we live in a place that gives him a chance to run marathons like this. He's done marathons for a long long long time... and I admire his tenacity. Shall miss him a tremendous amount while he's gone though!
Tomorrow? Trying out a new acupuncturist. Crossing my fingers he works out for me... Have had some not-so-fabulous experiences so far here... they are expensive appointments. Want it to be worth it.
Enjoyed watching this video, interesting study: Cell Nutritionals: Pomi-T Study - https://www.youtube.com/watch?v=383bzFpwJ0k
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