This morning was hard and then good.
I got to CancerLink and enjoyed a little yoga, picked up my ticket for their "Celebration of Life" at some big stadium tomorrow afternoon. Shall see if I have energy to go. Bringing husband and kiddo along if we do go. Had to duck out of yoga early, much to my chagrin as I would have enjoyed catching up with a few friends after class. Same thing will happen next week, sigh.
I had an appointment with my oncologist. That was hard. By the time I got to the appointment I felt like... I was the walking dead. Almost as weak as when I was leaving the hospital after the operation. Didn't enjoy the MTR ride over to the clinic, an elderly woman pushed me during entry (rarely do I get pushed) and I got a seat anyways. Letting go.
At the clinic I got my weekly blood draw but it hurt more. My poor veins are darn tired of needles. And much more sensitive after all these months of chemo, etc. Funny how that is but I was warned. I found out that I was running a low-grade fever and had lost 5 pounds in one week. 5 pounds. So many of my friends struggle and worry about weight, that is, getting weight off. But to lose 5 pounds in one week made me want to weep. I've worked so hard to put that weight on. I was at a healthy weight of 127 pounds (not anywhere near what I used to be) and I was proud of that weight. I don't like going below 130 to be honest because I bruise like crazy when I don't have any cushion on me... and I've seen more bruises this week. Sigh. Now hovering below 122...
My oncologist suggested putting me on an IV drip right then. I told him I wanted to go eat a burger and spend time with my friend. He made me promise to drink more yucky sports drinks to boost my electrolites (I tolerate Pocari Sweat here, too much sugar but at least I know it helps) and drink a lot of water. He's also concerned because my nosebleeds have started again, the chemo makes me have nosebleeds so it isn't much of a surprise to me... Just dealing...
I talked with my oncologist about the looming PET scan. I told him I was concerned about the rush to have one. He told me he just wants to get me strong and recovered from chemo at the moment and we'll talk about the PET scan in June. Ok. Sounds good. I think. I told him I'd prefer to avoid the PET scan until school is over. What's the point really of finding out before? I have stayed positive about things but honestly, I can't even consider any treatments/operations, etc before we're back in the states. I want his opinion and certainly plan to have the scan before we leave but... meh. Not in a rush... peace of mind? I'm better putting it off and getting stronger during June. Shall see what he says once I'm feeling better. He's very respectful but also isn't hesistant about speaking his mind about what he knows is best for my care.
I'm to watch my fever. If it goes up or if other things come up, I'm to go on antibiotics twice a day. I already have the prescription. Shall see. Fever isn't down yet. I checked.
I was able to meet up with one of my favorite people here in Hong Kong and have lunch and then book shop together. Spending time with my friend Tanja is always a "picker-upper" for me. We visited a book sale and I got 25% off a few books for school, woot. Wasn't too impressed with what they marked down 80% but was happy to have the energy to hang out and book chat.
Looking forward to work next week. Only 4 days of school and then a long weekend. My husband is excited because he's going to scuba dive in the Philippines. I'm happy for him. Looking forward to spending time with my kiddo too, just the two of us...
This afternoon I read a website that had some really good advice for people who are dealing with metastatic cancer like me. The American Cancer Society article is called "When Cancer Doesn't Go Away". Trust me, I can hope for it to go away but am honestly just realistic as well.
http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away
Appreciated the advice and thoughts.
Damn cancer.
Going to read and relax and drink many fluids.
Thanks for journeying all.
Showing posts with label bloody nose. Show all posts
Showing posts with label bloody nose. Show all posts
Saturday, May 16, 2015
Saturday, December 6, 2014
Results plus Thoughts Randomly Coming
The PET scan results were in, never thought another round of chemotherapy could be promising results but they are. They certainly are. I worked to redirect my thoughts when they went negative, worried about random pains in my body and redirected to positive every time I caught myself. It is challenging but I do think the more positive I can be, the better. Speaking of which, sometimes being around my oncologist, who I thoroughly respect, is not so positive, at all. Here's a few things that have come from him recently and in the past:
Here's another list- Top 5 Things I Don't Want to Hear From My Oncologist:
5. "There is a real chance the cancer could come back elsewhere, this is a long shot for being curative." - December, 2014
4. "After radiation, we will need to look at long term medication." - December, 2014
3. "There's likely to only be a 40 % of chance of success with chemotherapy." - September, 2014
2. "The results are not good, look your lymph nodes are lit up." - August, 2014
1. "You Have Cancer" - September, 2013
So, there's still a tumor on my lymph nodes in my chest near my heart. It is getting smaller. My oncologist insists that it has shrunk due to the chemotherapy, not just when the lung specialist removed a portion of it during my September surgery. There are no other areas in my body lighting up presently from the PET scan which is a good thing, a very good thing. Damn the lymph nodes, but I'm here. I have to have four more chemo treatments, two before the holiday and two after the holiday. (But I get to go have fun with family and friends and turn off the cancer mindset for a little while, hallelujah.) But I will get those chemo treatments done and then have a few weeks break and begin radiation treatment to hit those lymph nodes.
Things my oncologist said to me over the course of this year + were promising for the first two cancers, but there was a major shift when I had the metastatic diagnosis. That hasn't been so wonderful. I'm going to stay positive. My husband is not thrilled that I still have so much tumor lighting up on my lymph nodes, I agree with him, it sucks. It is disappointing. Damn cancer. But there is progress, slow but there. And I'll take progress. I'll also be happy to be done with chemo in 5 more weeks. Today's treatment was just fine. Normal one dose day with a visit and lunch from a special close friend. Was grateful. I also had many hours on my own with the kiddo tonight which I adored. We had fun planning out our evening and spending time together. Hooray for my husband getting a little time away from home to do things.
Random Thought Time:
Oh the vanity... Fully admit, working to stay positive about life... but sometimes vanity rolls thru a little.
How many of you have created odd situations in your mind and then acted them out? I've been concerned about my lack of hair and using my passport. Should I wear a wig on the airplane so that I don't need to worry about people questioning me? Would people question me?
I've thought about this to the point that I am imagining being up at the passport/visa entrance area and am asked to take off my head covering... drama drama drama. Who cares what I look like? I guess I do since I'm thinking about it. After thinking about it for a while, I chuckled to myself. I live in Asia. There are many many people who wear head coverings here. I don't believe that my little head covering is going to be an issue.
*Missing my hair. Looking at my scalp and sighing that it will be a while before hair recovers from the chemo and begins to grow in. The little bits here and there that didn't fall out have randomly started growing out, it is odd, a little curly. Shall see...
Burned my hand today a little bit in the afternoon, spilled hot soup on it. I used cold water and then my helper brought me a miracle medicine, Oronine Ointment, that helped after two applications. So relieved. Really annoyed by my klutzy actions lately. Knew the bowl was too hot so of course I picked it up a second time. Sigh. Slow down Debbie.
Actually had a pretty darn unpleasant bloody nose two days ago, will be glad to be free of medicine that has that side effect.... also noticed that one of my fingernails is now looking really unhealthy with brown above the white of the nail. Hmm. Some have mentioned that they lost their nails because of chemo side effects. Hmm. Shall see. Husband told me to put nail polish on it so that I don't worry... not exactly helpful but I get what he's saying.
I'm not so thrilled with my skin breakout on my face either. It is certainly different than the others I've dealt with in the past. My oncologist said that it is a normal cumulative effect of chemotherapy, didn't recommend anything. The nurse I talked with told me that it is worse for so many others... she shared with me a few sad stories about other patients that I really could have lived without hearing... So I suppose I'm lucky, sort of.
Oh vanity...
Read a study from a friend in the US who has a family member also dealing with cancer, found the article hopeful, will share with my oncologist next week. About new treatments helping metastatic cancer patients:
http://www.medpagetoday.com/MeetingCoverage/AACR/32048
Had enough to ask my oncologist this week, here was my list:
-PET scan results
-Nail
-Nose
-Face breakout
-Muscle pull (pulled in yoga yesterday, odd, feeling a little better though)
-Nausea medicine
-Plan for radiation treatment scheduling
He seems to have a limit after a certain amount of minutes talking together, I respect his focus and concentration as we meet and just keep writing my lists. He doesn't get annoyed with my questions
Thanks for journeying as always... Grateful for progress this time... Bearing up for 4 more doses.
Wednesday, October 8, 2014
Hope, Future thinking, and contemplation
So, I'm grateful for life... every day. I don't struggle when I write in my gratitude journal... I can even dig deeper than the grateful for family, happy healthy child, good marriage, etc. most days...
I don't quite get what completely picks me up some days and then brings me down other days... seriously, it shouldn't be hard to distinguish but suddenly I'm feeling positive after a slump. Or suddenly I'm feeling like slime for a while. I try not to fixate on things... just sorting thru emotions. Moving on.
Came across this article that made me appreciate having the chance to speak up and communicate how you're feeling, good reflection.
http://www.washingtonpost.com/news/parenting/wp/2014/07/22/im-a-mom-with-cancer-now-what/
Then I read an article on how scientists discovered that cancer grows faster when you sleep... sweet googly moogly... not pleased with that but they look at it as an opportunity to think about when chemotherapy drugs are administrated, etc. Hmm. Anything to help future patients:
http://www.forbes.com/sites/jonfortenbury/2014/10/06/tumors-may-grow-faster-while-we-sleep/
I think some days I deal with a little jealousy. For example, chatting with friends about the future... that is hard sometimes. Simple future plans like travel is mostly fun to chat and think about and living here in Hong Kong there are so many incredible opportunities for people to enjoy exploring. My husband is quite the planner. I'm a little sad to miss our well planned trip to China to visit the Great Wall, Xi'an, Shanghai, and more... I read aloud a few novels to my son that introduced him to things I wanted him to anticipate. He's really excited. So the boys are going without me. That's ok. My best friend is coming to spend time together while they're gone. I'm thrilled to anticipate her visit and it will certainly lessen the 'blow' of missing family vacation time since she and I will adventure depending on my energy levels. We also have two other family trips preplanned and paid for. Hope I don't miss them. My oncologist won't give us a definitive answer about the December trip but flat out said 'everyone needs a holiday'... so shall see. We also have tickets to visit home over spring break. I am having a hard time thinking further into the future. Summer plans? Let's see how this chemotherapy treatment goes. I have hope and I'll cling to it, but reality also looms.
Chatted about retirement with a friend the other day. Where do you want to end up, etc. I certainly had imagined retirement in the past. But now, not to be morbid or anything, I'm just unsure about the future and am focused on survival, day by day.
Had a great time visiting with lovely coworkers yesterday, had a late birthday tea and loved chatting with them all. Also tried out my new wig in a social setting- they were all extremely supportive. I'm still a little unsure about wearing it and honestly enjoy being bald at the moment with the scalp annoyances I'm having (using tea tree oil, seems to be helping)... I think I prefer wearing a scarf and honestly don't give a hoot at the looks people give me. As an expat, I'm quite used to being looked over anyways or simply ignored most of the time. So walking around with a scarf and a face mask isn't that odd. I can appreciate not standing out.
Enjoyed using one of my prepaid massages yesterday. You buy discounted packages at some places, works for me... It was the first time I'd seen my massage therapist since before I had the operation. So, she was a little shocked and asked a few questions but also was gentle and firm as needed. So grateful.
Last night I was surprised to have energy but took advantage of it and headed to a CancerLink workshop on stretching exercises, appreciated it overall, nice to be around people who know what I'm dealing with (mostly) and are so kind. I've committed to a few other workshops, too bad they're always way far out in Kowloon- energy plays a factor in whether I show up then. As it was I was late last night but enjoyed. I came across a good healthy recovery video for breast cancer patients recovering from surgery. http://breastcancerrehabilitation.com/watchthevideo.html Think I'll try to watch/look into it later more... will try exercises from the instructor yesterday a little bit in the next week.
Went to my acupunturist today and told him flat out that I couldn't drink that Chinese herbal medicine more than twice a day (I consider it a feat to get thru two of them) and he was mellow, gave me more, and told me he was happy I gained weight. He also lectured me about eating eggs, adding them into my food plan. Explained about how in Chinese practice eggs represent life and they should be eaten twice a day. Shall see. I had a salmon quiche yesterday at the tea and it was delicious that was one of my first egg-back-in-diet additions. I'll try to get at least one egg in me each day. Still a little freaked out about the estrogen factor of it though. I'm also still eating chicken and added in oatmeal. Shall see about that rice water... Stomach has lessened its issues at the moment. Sleeping isn't perfect but is a heck of a lot better than past weeks.
Finding that I'm avoiding some projects/responsibilities for a while and then when I finally address them it feels like such a successful thing... I miss being the one to tackle and instantly take care of stuff left and right but am realizing that this approach to life can be acceptable as well.
Thank you to all who donated to the fundraising campaign, so grateful, overwhelmed, appreciative. It was perfect timing as I just received the first of many "shortfall" bills yesterday from my insurance. No fun but approachable.
Enjoying art, excited about my friend (and sister soon after) visits, and appreciating little things...
Thank you so much for keeping up with me... grateful...
I don't quite get what completely picks me up some days and then brings me down other days... seriously, it shouldn't be hard to distinguish but suddenly I'm feeling positive after a slump. Or suddenly I'm feeling like slime for a while. I try not to fixate on things... just sorting thru emotions. Moving on.
Came across this article that made me appreciate having the chance to speak up and communicate how you're feeling, good reflection.
http://www.washingtonpost.com/news/parenting/wp/2014/07/22/im-a-mom-with-cancer-now-what/
Then I read an article on how scientists discovered that cancer grows faster when you sleep... sweet googly moogly... not pleased with that but they look at it as an opportunity to think about when chemotherapy drugs are administrated, etc. Hmm. Anything to help future patients:
http://www.forbes.com/sites/jonfortenbury/2014/10/06/tumors-may-grow-faster-while-we-sleep/
I think some days I deal with a little jealousy. For example, chatting with friends about the future... that is hard sometimes. Simple future plans like travel is mostly fun to chat and think about and living here in Hong Kong there are so many incredible opportunities for people to enjoy exploring. My husband is quite the planner. I'm a little sad to miss our well planned trip to China to visit the Great Wall, Xi'an, Shanghai, and more... I read aloud a few novels to my son that introduced him to things I wanted him to anticipate. He's really excited. So the boys are going without me. That's ok. My best friend is coming to spend time together while they're gone. I'm thrilled to anticipate her visit and it will certainly lessen the 'blow' of missing family vacation time since she and I will adventure depending on my energy levels. We also have two other family trips preplanned and paid for. Hope I don't miss them. My oncologist won't give us a definitive answer about the December trip but flat out said 'everyone needs a holiday'... so shall see. We also have tickets to visit home over spring break. I am having a hard time thinking further into the future. Summer plans? Let's see how this chemotherapy treatment goes. I have hope and I'll cling to it, but reality also looms.
Chatted about retirement with a friend the other day. Where do you want to end up, etc. I certainly had imagined retirement in the past. But now, not to be morbid or anything, I'm just unsure about the future and am focused on survival, day by day.
![]() |
Heading out for the day yesterday... |
Enjoyed using one of my prepaid massages yesterday. You buy discounted packages at some places, works for me... It was the first time I'd seen my massage therapist since before I had the operation. So, she was a little shocked and asked a few questions but also was gentle and firm as needed. So grateful.
Last night I was surprised to have energy but took advantage of it and headed to a CancerLink workshop on stretching exercises, appreciated it overall, nice to be around people who know what I'm dealing with (mostly) and are so kind. I've committed to a few other workshops, too bad they're always way far out in Kowloon- energy plays a factor in whether I show up then. As it was I was late last night but enjoyed. I came across a good healthy recovery video for breast cancer patients recovering from surgery. http://breastcancerrehabilitation.com/watchthevideo.html Think I'll try to watch/look into it later more... will try exercises from the instructor yesterday a little bit in the next week.
Went to my acupunturist today and told him flat out that I couldn't drink that Chinese herbal medicine more than twice a day (I consider it a feat to get thru two of them) and he was mellow, gave me more, and told me he was happy I gained weight. He also lectured me about eating eggs, adding them into my food plan. Explained about how in Chinese practice eggs represent life and they should be eaten twice a day. Shall see. I had a salmon quiche yesterday at the tea and it was delicious that was one of my first egg-back-in-diet additions. I'll try to get at least one egg in me each day. Still a little freaked out about the estrogen factor of it though. I'm also still eating chicken and added in oatmeal. Shall see about that rice water... Stomach has lessened its issues at the moment. Sleeping isn't perfect but is a heck of a lot better than past weeks.
Finding that I'm avoiding some projects/responsibilities for a while and then when I finally address them it feels like such a successful thing... I miss being the one to tackle and instantly take care of stuff left and right but am realizing that this approach to life can be acceptable as well.
Thank you to all who donated to the fundraising campaign, so grateful, overwhelmed, appreciative. It was perfect timing as I just received the first of many "shortfall" bills yesterday from my insurance. No fun but approachable.
Enjoying art, excited about my friend (and sister soon after) visits, and appreciating little things...
Thank you so much for keeping up with me... grateful...
Tuesday, October 7, 2014
Not so muddled thoughts
Taking breaks actually creating a little art has been nurturing. Glad I'm trying #Inktober where you create art with ink, doesn't have to be something complicated, each day in October. I like daily challenges like this, gives me a little focus and let's face it folks, I like focus... if you hadn't noticed that about me already.
So grateful for Give Forward fundraiser, relief is palpable. Thank you x 1000 to my friend Erika for pushing me to be open to gifts and to all who have gifted with words, support, and financially. Overwhelmed but appreciative....
Chemo effects from 3rd session of 12. I'm not sure how I feel about things at the moment. A little different than last two session reactions which I'll accept, it was a two medicine session so each week will be a little different. I was surprised to have not so much nausea. Instead I'm dealing with upset stomach, scalp freaking out, three crazy itchy mosquito bites from 4 days ago- they're easing up a little bit thank goodness for calamine lotion I'd forgotten I bought- normally I get welts with every mosquito bite but with my healing being inhibited by drugs the biggest welt actually got a blister... crazy, and a dry bloody nose - not bleeding- learned that I should... not blow my nose! Fabulous....
Honestly I'm also dealing with a little anger. My best friend was relieved that when we Skyped I wasn't as positive and happy as usual. I won't go into what made me angry but it is justified and I'm figuring out how to manage addressing the conflict so that it won't hang over my head. Not worth my worry a few years from now, so just trying to address and deal. As many who know me well I do have a few control issues and have worked to learn how to let go a little... sometimes that backfires.
Chatted with my wonderful life coach and got the BEST advice from her, besides figuring out how to get my bottom into the chemotherapy chair every week, how to calm myself at night... this is something I already have done in the past but I just hadn't done it in the evening! Are you ready for what gave me a good night's sleep for the first time in almost two months? Drumroll... Legs up the wall. Yep. Place a yoga mat on the floor next to the wall, put your legs up the wall with your bottom against the wall... hooray. Deep breathing, meditation, and a little quiet thinking helped me relax. 20 minutes later I quietly climbed into bed and actually fell asleep. Amazing. Much better to try this vs. resorting to sleep medication! Learned that if you have high blood pressure you can't do this though, careful my friends...
Enjoying qi gong still... appreciating the energy focus, health focus, and friends who attend...
One friend told me tonight that I should investigate answers to some of my health issues online... so grateful for the reminder. Found that my scalp issues occur with so many people who are dealing with chemo. I know I'm not the only one but wow to the resources once you start looking. After sorting thru many, I appreciated the tips for scalp issues here:
http://cincovidas.com/chemo-side-effect-red-painful-welts-on-my-scalp%E2%80%94what-can-i-do/
But of course will check in with my oncologist on Saturday about new not-so-fun symptoms as well...
Also trying out drinking brown rice water to help my stomach calm down a little. Shall see how that goes now that I'm going to drink it three times a day. I do so love drinking horchatas but this certainly wasn't. No added sugar and a little cinnamon does not a horchata make... but shall accept shortcomings if I can feel a little better.
Here are a few of my little #Inktober sketches, makes me happy to pick up a sketch pad again. Funny that I was never far from one all through my life until I was around 22... found a similar sketch pad to one I used to scribble in all the time, nice to have a different outlet for expressing thoughts. Just having fun with pen/markers... haven't felt like drawing on my iPad, etc... a drawing pad is enough for me!
So grateful for Give Forward fundraiser, relief is palpable. Thank you x 1000 to my friend Erika for pushing me to be open to gifts and to all who have gifted with words, support, and financially. Overwhelmed but appreciative....
Chemo effects from 3rd session of 12. I'm not sure how I feel about things at the moment. A little different than last two session reactions which I'll accept, it was a two medicine session so each week will be a little different. I was surprised to have not so much nausea. Instead I'm dealing with upset stomach, scalp freaking out, three crazy itchy mosquito bites from 4 days ago- they're easing up a little bit thank goodness for calamine lotion I'd forgotten I bought- normally I get welts with every mosquito bite but with my healing being inhibited by drugs the biggest welt actually got a blister... crazy, and a dry bloody nose - not bleeding- learned that I should... not blow my nose! Fabulous....
Honestly I'm also dealing with a little anger. My best friend was relieved that when we Skyped I wasn't as positive and happy as usual. I won't go into what made me angry but it is justified and I'm figuring out how to manage addressing the conflict so that it won't hang over my head. Not worth my worry a few years from now, so just trying to address and deal. As many who know me well I do have a few control issues and have worked to learn how to let go a little... sometimes that backfires.
Chatted with my wonderful life coach and got the BEST advice from her, besides figuring out how to get my bottom into the chemotherapy chair every week, how to calm myself at night... this is something I already have done in the past but I just hadn't done it in the evening! Are you ready for what gave me a good night's sleep for the first time in almost two months? Drumroll... Legs up the wall. Yep. Place a yoga mat on the floor next to the wall, put your legs up the wall with your bottom against the wall... hooray. Deep breathing, meditation, and a little quiet thinking helped me relax. 20 minutes later I quietly climbed into bed and actually fell asleep. Amazing. Much better to try this vs. resorting to sleep medication! Learned that if you have high blood pressure you can't do this though, careful my friends...
Enjoying qi gong still... appreciating the energy focus, health focus, and friends who attend...
One friend told me tonight that I should investigate answers to some of my health issues online... so grateful for the reminder. Found that my scalp issues occur with so many people who are dealing with chemo. I know I'm not the only one but wow to the resources once you start looking. After sorting thru many, I appreciated the tips for scalp issues here:
http://cincovidas.com/chemo-side-effect-red-painful-welts-on-my-scalp%E2%80%94what-can-i-do/
But of course will check in with my oncologist on Saturday about new not-so-fun symptoms as well...
Also trying out drinking brown rice water to help my stomach calm down a little. Shall see how that goes now that I'm going to drink it three times a day. I do so love drinking horchatas but this certainly wasn't. No added sugar and a little cinnamon does not a horchata make... but shall accept shortcomings if I can feel a little better.
Here are a few of my little #Inktober sketches, makes me happy to pick up a sketch pad again. Funny that I was never far from one all through my life until I was around 22... found a similar sketch pad to one I used to scribble in all the time, nice to have a different outlet for expressing thoughts. Just having fun with pen/markers... haven't felt like drawing on my iPad, etc... a drawing pad is enough for me!
I love my dog... watching her peacefully sleep is a new way for me to pass the time, always so grateful for her companionship...
I used to have a hedgehog... still slightly obsessed about them but I'll NEVER own one again. They are disgusting creatures... *I loved my little one and treated him very well... but NEVER again. There's a kid's story there, I'm working on sorting it out in my mind presently...
A special friend requested that I try out drawing a horse in honor of her birthday... used to draw unicorns all the time as a kid, I was one of those unicorn daydreamers, but this was... ok.
I love "Dot Day" each year and a friend asked me if I'd created my dot for this year yet... no I hadn't... grateful she suggested it, was fun to think about what represented me presently but also it was odd because the picture reminded me of my school's logo...
A good friend and I shared a birthday, she brought me flowers when we spent our birthday afternoon together... loved them, good challenge to get on paper.
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