Enjoyed the weekend, dealt with pain, coughing, and such but really appreciated time with family plus downtime. Coughing is easing up a teeny tiny bit...
Getting thru the days. Enjoyed getting back to yoga classes on Saturday. Missed for weeks. Will miss next Saturday but that's just one time...
Noticing hair coming out. Run my fingers thru the hair and get 3-5 hairs. My husband said "So don't do that!" But it is honestly itchy until I do do that... One went PING onto my food plate last night. Sigh. I'm NOT going to shave it off though.
Presently, hair falling out is nowhere near like when my amazing hair stylist thinned my thick hair around a year ago. Annoyed to deal with hair loss again. I've been dreading this for way too long. Good to just have it happening already.
Took a good walk with a good friend this afternoon. Helpful to talk out things for a while. Helped me realize that I'm getting concerned about too many things. I addressed many worries tonight, made some decisions about insurance situations that were weighing on me and more... Feeling calmer.
There are many, many unknowns right now, but when is there a time when there aren't? Focusing on having faith that things will work out they way they were meant to. Also focusing on a clean bill of health, no self sabotage. Sure, I'm addressing my frustrations, acknowledging when I feel despair but also trying to turn those thoughts to positives...
Next Saturday I'll get thru chemo. Last time. Getting there.
Mutts Comics plus Kris Carr = brilliance. Loved.
Went out yesterday and did a little swing dancing with my love. So wonderful to be dancing, to be spun around, to work as partners in that way. I just love dancing with my husband. I also simply love dancing. I've made it a goal that I'll be able to have the stamina to do zumba again. With qigong and yoga helping me get stronger, it is possible.
Thanks for journeying with me...
Off to dance.
If only I could get this comfortable and sleep as soundly as our sweet Dulcie dog. She's doing a little better...
My oncologist warned us. He said, "I know I've gone on what others consider a very aggressive route with your treatment. If you talk with an oncologist at the local hospital, I know this will come up as controversial."
Why yes.
Yes it did.
I haven't heard someone say the word 'controversial' that many times in the space of 20 minutes before. The local hospital oncologist said that my oncologist has gone the extreme route all the way through... including radiation, etc. The local hospital oncologist flat out told us that there are three choices that they could make to support me:
1. Do nothing and watch how I'm doing simply with scans, etc.
2. Treat me with chemo only partly with Taxol and Carboplatin
3. Treat me with chemo cocktail that my oncologist planned and gave me before: Taxol, Carboplatin and Avastin.
The oncologist said that in most cases they would only select #1. After further discussion with my husband about finances, our choices, and our plan, he said that he needed to get back to us.
He is going to meet with a panel of oncologists on Thursday and see what they suggest. Then my husband is going to go to my appointment on Friday (as my proxy) and find out what they say, possibly with me on the phone.
My husband said: "You don't need to form and opinion or think about this until Friday."
Ok then.
In waiting mode but grateful that there's an option we're exploring and that we're also in complete agreement that we are not compromising with my health plans.
If we go with the private oncologist I've seen the whole time I'd start chemo next Monday. But shall see what comes of the local hospital first.
Some interesting points this local hospital oncologist shared:
1. I reacted well in the past to the chemo but there might be new worrisome side effects
2. Taking more of the chemo cocktail might make the chemo less effective in the future if (god forbid) I need chemo again.
3. There's no proved research that says that more chemo is effective, many oncologists are doing one of the three options above without any collective data.
Hmm.
Controversial.
Just want to live day by day appreciating life, thank you. Trusting my oncologist at this point but forcing myself to be patient til Friday since money is a factor. Sigh.
Thinking about Bali, roof of one place we stayed at...
Today at work I received many compliments about how good I'm looking, healthier, etc. Some mentioned how nice it was to see the curls coming in. Sigh. I joked with one person "Just in time to get more chemo" and startled her. My sense of humor is still twisted a little tight I guess.
Glad I can see where I'll get back to hopefully by August/September/October (maybe I'll have curls by my birthday this coming year, that'd be a heck of a lot better than the past two birthdays) after this next round of chemo. I do feel a little whiny and have thought over the past few days how it just isn't fair. But what is fair in life at times? There are terrific wonderful days and there are tough days, riding those waves... Bearing up, dealing, and not thrilled but coping.
Thanks Megan for joining in on our Bali adventure! So grateful...
Knew it was coming. Doesn't soften the blow though mentally I guess. I'm not worried about these last two rounds of chemo. I know what to expect, what is coming, etc. I'm just not looking forward to the experience for these last two times. It feels like I'm signed up for two more rounds of poisonous torture that must occur. I probably have one more week before the first round of chemo goes in. Looking into local hospital information still and also I need to talk with my administration before I can have an official appointment.
I know I'm going to lose my hair again. Not going to shave it off this time though. Will just deal. I'm not thrilled by this and am honestly quite concerned about what to do since I'll be working full-time during the last two rounds but shall play it by ear. My principal has given me permission to wear "hats" to work, probably will go with that. I'll transition from headbands that I'll wear for the next few weeks to hats. Don't want to go back to wearing a wig.
Learned about something interesting on a blog I follow today about a castor oil combo you can use to help your hair grow, support your skin/scalp's health. Shall look into it further when necessary. http://wellnessmama.com/35706/castor-oil-hair/
Have had chats with my husband and son today about the information my oncologist shared earlier.
My oncologist said that it would be best if I continued with the same chemo combination for the last two rounds/doses... My kiddo was not thrilled to know that I'd have more chemo. I think he was watching my hair grow out and told himself that I was getting better. We talked for quite a while about how the medication would have the side effects we don't like/enjoy but that the hope is to get rid of cancer cells and have me around for a long time. He's accepted it and knows the door is open for more conversations. Never fun when tears come to my kiddo's eyes. My husband is stoic and there with me every step of the way. He also just got through another scuba certification course! So proud of him...
We had a fantastic family trip to Bali, not everything went as planned, but we enjoyed time together, time with our friend Megan, and many adventures. I'll share those on my Styling Librarian blog. Often it was way too hot for me but that wasn't too big of a surprise since I prefer happy-medium weather. I'm starting to think about moving back to Oregon more now. Mentally packing, picking what I will/won't need, and thinking about what we can ship ahead of time. When we move, we're not bringing back any furniture or anything like that, just 2-3 large suitcases each when we fly. I think the largest thing we'll have is our Dulcie dog's carrier. Will see about that. It was wonderful to see her after two weeks away, she's such a sweet good dog.
Shall see what happens in the next few months... grateful for my increased strength and appreciating the days my brain is sharp... will be especially patient with myself the next month and a half. Surprising how fast time has flown this year already. I look forward to the last 11 weeks of work. Feel lucky to be supported at work, with friends, and home as well...
Another week buzzing by. Enjoyed these days at work and home... Might be offline for a few weeks except a word here and there. Leaving my laptop at home while we travel this time. I'll have my iPad but am not as comfortable typing on that.
Grateful I booked an appointment with my acupuncturist on Tuesday. I was in a bit of pain in my back and chest. Plus my stomach wasn't treating me very kindly... the day after acupuncture treatment I felt incredibly better. Qigong that evening helped as well I'm sure... starting to make qigong part of my daily routine.
This afternoon I met the lymphedema specialist to see if there was anything I need to be concerned about or careful with and was quite reassured by the end of the appointment. I learned how to give myself a lymphatic massage and also he whipped out his sewing machine and created a compression garment that looks like half a corset made of stretchy fabric and foam cut to shape for my breast that has been painful since September. Just for sleeping though. Woo hoo to a solution that doesn't include something going over my shoulders. Thrilled. Presently I don't need to worry about my arm/legs but I need to be aware and careful of how they are feeling/doing.
If needed for friends in Hong Kong: Nathan Bridgeman was professional, thoughtful, helpful, and reasonably priced. http://www.cltvr.com.hk/mavista/cms/en/About_Our_Therapist
*I'm not quite over how quick he created the compression garment for me, this guy was a talented, experienced expert and I was thrilled to watch him make some of it on his sewing machine! Shall see how it helps me out. Doesn't feel like a torture device, just feels supportive. Plus, it was nice to work with an American who I didn't have to stumble with for communication...
There's nothing like having goals. Presently, there are many... but I'm not overwhelmed, yet.
First: trip to Bali. Grateful we were able to shift tickets and make this an affordable possibility. Especially happy that I have a break from treatment and can enjoy this with my family without being in a partial chemo stupor. (Fully admit, most of the first week of our trip to the Philippines I was knocked flat by chemo I'd received the day before our flight.)
Second: transition preparation. Getting thru paperwork. Getting thru purging. Going thru library projects so that things can be fantastic for the next teacher librarian and my lovely library assistant who has patiently dealt with project after project this term. I packed two boxes at school of personal items (bringing quite a bit less back to the US but that's ok). Going to begin using the postal system and mailing boxes home on a weekly basis.
Third: Chemo. Get thru the last to rounds. Meh.
Fourth: focus on the move to the US. We're down to 104 days until we're home. Wow. It is really going quick.
I'm trying to put cancer aside and enjoy the days. My husband did have to talk me down from a ledge last night when I started worrying about when I'd get the last two chemo treatments, etc. Shall see. He reminded me that worrying and wondering was useless until I see my oncologist in a few weeks.
Hey, there's more hair there!
It is funny to get so excited over hair. But I am. I got a little jolt when I noticed my baby fluff hair on my neck. Loved seeing my eyelashes back in full force. Nose hair? Meh, made me laugh. But having the hair on my head growing back makes me happy. It is odd how it is growing back but I see and feel curls! Hooray hair.
It is starting to hit me how much I will miss Hong Kong. I love the people I work with, they inspire me. I love my librarian friends, they provide such support, love and energy. I adore my Jewish community friends and am heartbroken to leave a community that I feel special and welcomed in... We have other wonderful friends that I'll miss too... Sigh. I know I've missed Oregon for the same reasons plus I miss my family a ridiculous amount but man, I will miss Hong Kong, it has embedded in me and there are so many things I think about on a daily basis that have helped me grow, stay calm, and learn over the past three years. Sigh. Had a good conversation today with my human resources contact who has helped me deal with the insurance nightmare and is quite kind and friendly... She was so relieved when she found out that I'm returning home to a job (I don't know what yet, but I'm hopeful/excited/happy) and that I'll have insurance. Yes, that is a big thing to be reassured by. She also liked that I'd be 5 minutes from my parents house... excited to move back into our old home... Very sweet woman. Appreciate the people that have been there for me and saved me over and over since August '13.
I'm still glancing at my VirtueScope every day. (Helps to have it on the wall next to my side of the bed.) This is my month to focus on "resourceful"... Well, I've always felt that I'm pretty resourceful, but it has been a nice word to think about every morning. As a teacher librarian, I'm all about resources. As a blogger, I feel resourceful when I'm recommending books and websites and such. Hmm. Next month? Dignified. Hmm.
I sat down and counted out weeks. I've worked for 11 weeks now. Without needing to take a sick day. Wow. I didn't think that would be possible. Especially with still going thru chemo treatment in the beginning and all thru the darn radiation and side effects. 11 weeks. 5 1/2 weeks were radiation... After this holiday there will be 11 weeks more of work. Shall see how those weeks treat me. So grateful to my amazing recovering body.
Well, thanks for journeying with me... shall try to post here and there while we're on this trip but never know about internet connectivity.
Getting thru the days. Enjoyed visiting an Indian Food restaurant, delicious place. My husband said, "Wow, I'd get this takeout food every day if I could get you to eat this much at every meal." Nice to have an appetite and like food... PLUS we ordered take-out the next day from the same place, y-u-m. Yes, I'm addicted and my husband is ever so supportive...
I'm quite happy that I'm looking at final two treatment days. Pretty exhausted. Painful to deal with treatment but I'm grateful to not be burned on the skin this time. I think the main thing bringing me down right now is the shoulder and neck pain I've had since the first day of treatment. Putting that right arm over my head has exacerbated the pain... not certain how to handle it.
Normally I'd put ice on a pained area or a heat pack but I recently sat through a presentation about lymphedema and one of the recommendations was that I avoid a sauna, hot tub, or anything that makes my skin pink... also I'm supposed to avoid having anything freezing on my skin. That makes things quite limiting.
I learned also about how lymphedema occurring in different quadrants based on how the lymph nodes work... Unfortunately, I've had lymph nodes compromised in 3 areas of my body. With the cervical cancer, they harvested lymph nodes. With the breast cancer, they harvested lymph nodes under my right arm- go figure, it is my right shoulder that's in pain... With the metastatic cervical cancer, they removed a portion of my lymph nodes near my heart, those are the ones that are getting radiated presently. Think I should see a specialist to check on my lymph nodes, learn if I need compression sleeve, etc. Shall be chatting with my oncologist about this on Saturday when I see him next. Quite disconcerting but good to be aware I suppose.
Now to finish my long countdown from 30 to 0. Will be really happy to get there finally.
My husband snuck this picture of me when I was snuggling with our dog today. I'm pretty darn fatigued lately... My hair is growing in quite nice but I know it could all go away with those last two chemo treatments, sigh. Shall see. Personally the thing that stands out to me is my eyelashes since they are mostly returned now... I somewhat almost can see myself and see a healthy person again...
Thanks for journeying with me, really grateful...
What I can look up at during lunch duty at school... Bauhinia tree
20/30 done 10/30 left. Brain always goes to chemo after thinking about radiation but I guess this is natural. Will celebrate the days in between.
Been thinking about life...
How I keep thinking that I'm a shadow of myself... can tell I'm hitting that fatigued state that I hit during the last two rounds of radiation. I remember being annoyed with myself the past two times but this time I'm working to be patient and loving with myself.
If I have to be a shadow of myself, I need to try to be the best shadow of myself. What do I like most about myself? Where do I direct my energy? Why should I dedicate any time for worry or anger that could be focused on love and support?
Working to think out activities... I'm excited that we've changed our plans and now are able to have tickets to move home to the US in July and also visit Bali. We're going there for Spring Break/Easter holiday. Very happy and curious to see what we get to do. I'm slightly sad to not get home over the coming holiday but since we're moving home, it feels wise to travel cheaply and adventure a little more in Asia.
Have focused this month on sharing my sense of humor with others... making children laugh? a treasure. Making my son laugh? HAPPY day. Hearing my husband laugh? warms my heart... When I actually laugh aloud? Rare. I usually laugh in my head.
Here's something that made me laugh aloud recently:
I was chatting with some of my older students during their lunch break in the library the other day. One reader was holding a book I adore (and actually even mentioned here before) - Because of Anya by Margaret Peterson Haddix- the book is about a girl who has alopecia areata- losing all hair. Talked with the girl and others about how I cut/donated my hair to Locks of Love in the past. One student said to me: "That's quite funny Mrs. Alvarez because some students were saying that you were wearing a wig but instead you've donated your hair for a wig!" I said to him, "I did that a long long time ago... Hmm." Later I chuckled and chuckled about this...
I haven't talked about wearing a wig with any of the kids. But I do have permission to wear a hat at school now. Quite comfortable when I have a hat on... Shall see. I do know that this past Friday I told myself that I no longer would wear the wig to school. Hoping to not place it back on my head, shall see. Enough about wigs and hair.
Little baby eyelashes are starting to grow out now. Once again I had that thought at first, "huh, thought I washed off my makeup last night. Oh, that's little hairs growing out!"
Going to start writing lists again to prepare for the July move. When to provide notices, pack, mail boxes, deal with paperwork, and more...
So grateful for this break from work.... Long naps and sleeping til a normal hour is just beautiful to enjoy. Makes days go by and treatments a little bearable.
My Dulcie dog is snoring next to me. I adore her. I did learn something though. I lied to myself, I lied to others. Dulcie is actually 14.5 years old, not 13 (I feel like I've lost 1.5 years of life with her) oops. I honestly knew this, I think. She's going to turn 15 right after we move back to Oregon. Oh boy. Getting older is the pits sometimes, can't believe my girl is over 100 already. I'd love to get older though, wouldn't complain at all. Love life... So, hair. It is growing out. I learned from many others who share their experiences that your bangs area is the slowest one to grow out... sigh. That's where all my grey is. Shall see. Wig. I'm wearing it, still doesn't feel like me, still flops in my eye and makes me miss my curls... I've talked with a few good friends who have honestly told me about when they quit wearing their wigs and went public. Personally, I know my hair is long enough now that I could be free of the wig. I know it. I'm just not ready for the shock I'd give my students. 1. Because it is so darn short 2. Because it is so darn grey 3. Because it is so darn straight 4. Because the darn chemo might make it fall out again after radiation... Shall see.
My kiddo took a picture of it. (One friend took a weekly picture of her hair to see the progress of the grow out. It was interesting. Appreciate her trust and support...) I know I need to wait 3-6 months after chemo before I can dye my hair... so says websites and such. http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/using-hair-dye-after-chemo This also was a little more helpful... more about natural hair dye: (I just want to be brown, no bleaching, etc... sure wouldn't mind trying out henna, hmm.) http://www.herbatint.co.uk/herbatint/features/herbatint-article.php?id=50 I went to an organic shop and picked up henna hair dye and will try it out sometime. Talked with my oncologist and he said he didn't think I should waste money dyeing my hair since it will possibly fall out again with the two other rounds of chemo... sigh. Told me he was concerned about damaging my hair- (MORE than chemo has damaged my hair?!) Not like I'm bleaching it... ;) Shall see. I'm almost half way thru radiation. Day 15 on Monday. I can feel it. Honestly. In my chest it is like a little ball of pain. Hopefully that pain is all the cancer cells dying. I really appreciate the weekend. My oncologist prescribed me with three more medicines- one is acid reducer- returning to taking this after being free of it for 4 weeks. He said it is to protect my esophagus... I somewhat find it funny that on the back of the box there a "poison" sign?! Then he prescribed me with Sucrate gel that I'm supposed to take 1 hour before I eat- sigh... the timing of that couldn't be worse- shall see how I do- it is to coat my throat down thru my stomach to help me out if I get worse- don't have to take it yet... He also prescribed me this cough syrup called Comephen- there's codeine in the ding dong stuff, not at all excited. Plus sugar is part of the ingredients of the syrup. The coughing while teaching has sucked but I'm not certain it is bad enough for me to be on codeine! Shall see. Loved the weekend because I enjoyed wearing a hat the whole time vs a wig... freedom- a little bit. Enjoyed hanging out with family and friends this weekend, grateful for the time AND energy. Also appreciating yoga on Saturday mornings, good to have the class to learn in and help my body heal in... amazing how much I've back slid physically compared to my time in yoga three years ago. Working on being very patient with my body as I take the class. While I was browsing the web I learned more about nail care, good info... almost every one of my nails lifted/separated from the nail bed up to a certain point around the beginning of December. Painful, yes. Seemed to heal though (visible still yellow/blue/green, yuck) but this is good info since I have to deal with a little more chemo: "For home care, patients with signs of infection in separated nails can soak their fingers or toes in a solution of white vinegar and water for 15 minutes every night. It kills the bacteria and dries the areas out." - http://www.webmd.com/ovarian-cancer/features/appearance-during-chemo?page=4 Well, thanks for journeying with me... time is starting to fly by as I realize we're moving home in 5 months. Wow.
My kiddo has found my hair so soft that he finds it fun to pet now. Told me that he feels happy when he sees it growing out because he thinks it means I'm getting better...
This morning I had these thoughts (after a little extra sleep in- didn't feel quite myself so indulged in more time...).
"What is going on? I know I washed off my makeup last night. Why does it look like the eyebrow pencil is still there? *Move closer to the mirror.* Oh my goodness, those are little baby eyebrow hairs growing in! I had no idea I had so many eyebrow hairs before. I've missed you little ones..."
So, I'm taking it as another small step, eyebrow hairs are starting to grow in a little bit. Some aren't at all. Shall see how long/if they come back. Still using the eyebrow pencil.
Eyelashes? Eh. Shall see.
Hair? Most areas I'm noticing it growing in. It is soft. It is not curly. So I keep telling myself more might be coming.
It has been a pretty good weekend. Enjoyed family time, friend time, and the only time I didn't enjoy was when my computer completely died on me... I had no backup of stuff. Um. Oops. Quite upset. All my writing, gone. All my family home videos, gone. All my music, gone (sob- might have stored favorite cds in the US, I hope.) Oh well. My own fault. Nice people at Apple Genius Bar tried to rescue files with no success. Told me that I could go to a specialty recovery store and pay money for my computer to be restored/files found... um no. Just wipe the darn thing clean. And so he did, asking permission many steps along the way. Sigh.
Had a little pity party and now am thinking about the three manuscripts that I felt good enough to start sending to agents- but hadn't... rewriting is in order! Hopefully for the better. The other manuscripts are gone gone gone... didn't even print some. Sigh. New plans for the future. For now just dealing with loading applications and letting go.
Quick journal for tonight.
Continuing the journey, thanks for coming along...
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.
So the before is below in blue and the after is above in blue. Must it be blue? My favorite color? Meh. You can see measuring info and such... So, lymph node tumor right next to my heart, shrinking. I get a whole fancy binder with each PET scan. Not the kind of book gift I want, but I'm collecting them nonetheless. This is just one page of many many many analyzing my body scan.
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.
Going thru the days with a little purpose, focus... taking things carefully.
Not living in fear but awareness over the fact that I've fainted a few times and I do not want that to occur again nor do I want to be alone if it occurs.
Side effects are slightly less this week. I'm feeling a little stronger. I think... but I'm not pushing myself. My stomach totally is not thrilled with chemotherapy, it won't calm down... but I'm still consistent with medicine/natural treatment. Not so thrilled with rice water but I'm drinking it. Nose isn't happy with the medicine, dealing with many bloody noses but not terrible, will look forward to this lessening eventually.
A wonderful friend suggested I listen to a podcast and then I read about it in a magazine and then another friend told me I'd enjoy it...- that's hard because I love my audiobooks and was in the middle of a really good book. But today I was lost in the podcast- Serial - http://serialpodcast.org/ - now complete and waiting til December for the next airing, fascinating... what research and detail involved.
I'm still trying Yoga Nidra which is peaceful. The friend who has been so sweet coming every week to help me with this practice suggested I listen to a new group, so I am- Edo and Jo... Lovely voices together. http://www.edoandjo.com/kirtan-alive A little bit like the chanting and mantras I've been getting accustomed to in the chanting and yoga class.
My hair is growing out- what there is of the hair... shall see if/when more hair begins growing. Kiddo is amused by the whisps that are growing out. I'm watching and noticing more grey than brown but what's new about that? My body has been in crisis for a while, of course the hair will be grey...
Treatment this Saturday will be 2 doses... and then I'll have a PET scan... then one more official treatment the following Saturday. Shall see what happens after that...
Chemo Week 7. This isn't something I'm getting used to. Sure there is the routine that I'm familiar with but feeling the liquid push into me sucks, every week. Most weeks I shiver and feel quite cold as the drip begins. Two drugs this time. Meh. I wouldn't wish this on anyone.
I talked with the nurse about my veins today, no fun to do so but found out that one vein isn't viable anymore for chemo drip, it has collapsed. I knew it would be coming but I find it sad at the same time. Two weeks ago I could tell my veins were not happy and I had quite a bruise/quite a bit of pain.
*
So, this past week included saying goodbye after almost two weeks to my best friend Sheli who was such a godsend and wonderful companion... so grateful for the time we had together. (Thank you Sheli, love you BF, so lucky to have such a beautiful friend for over 28 years....)
Goodbye at the airport the good way, with fun photos and hugs...
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Now we welcomed my sister Rachel for a 9 day visit. It is fabulous to have time together with her. She arrived just in time for Halloween and brought along some fun wigs. I loved walking around with a wig, quite amusing and fun. I know we look a little similar... we love to surprise people who know only one or the other of us and come into a place together. Was amusing at the oncologists office today when the nurses chuckled over our similarities... So we are exploring Hong Kong slowly together. I won't push it. In fact, after chemo today, we went to lunch at a great place SimplyLife, enjoyed a yummy salad there. We also wandered through the gardens but when we got to stairs for special areas I realized it was enough... so we headed home. See? I stopped. That's what Sheli taught me to do this past week. Can enjoy what we do without pushing too much.
Already brought Rachel to a bookstore, love our wigs... fun time...
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My sister and I had a conversation today with my oncologist about December. He wants to do the PET scan to see how successful this chemo has been the second week in December and then wants to immediately continue with a fourth round, ARGH ARGH. This means a few more chemo sessions. But then he said he thought that I might be able to go on the family holiday trip that we'd planned. Not promising anything since much hinges on results from the PET scan... so far blood tests that do have cancer markers after the lung/lymph node surgery the cancer markers were really high but they've progressively lowered over the past month... so it's another wait and see situation. ARGH to more chemo. I knew it was probably coming, just not thrilled. Maintained weight this week, considering that a success...
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Attended a Look Good, Feel Good workshop with my sister at CancerLink and appreciated the fashion, wig chat, and makeup demonstration. I really like the Hippfish Salon, talented people there- went before diagnosis, and know how generous it is that they volunteeer and donate their time to present to a group of interested people... so personable, friendly, knowledgeable, and friendly as well. I personally enjoyed many tips, especially the reminder that as a cancer patient (or just regular person) we should try to find non-scent/sensitive skin laundry detergent and quit using fabric softener... Wear bright colors vs black and white so that you compliment and accentuate yourself... Moisturize... Eyebrow tutorial was quite interesting, shall see if I need to do it, so far I haven't lost mine! But Rachel brought a transparency sheet with her so that I can trace my eyebrows so that I have a guide to draw them in if needed. Wigs... wigs... wigs... I've mentioned that I'm more comfortable popping fabric on my head vs. a wig. Wigs are expensive. I did buy a curly wig that is nice enough but I learned what makes me uncomfortable about the front of the wig. So I've made an appointment at Hippfish to get my wig trimmed a little bit by an expert and am curious to see how that works out. I want to just feel a little confident and comfortable.
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Healing the past...
A friend shared this article, it really relates to what I've heard over the past few months: http://wakeup-world.com/2014/10/27/healing-past-trauma/
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Thanks for traveling through this journey, day by day... Have been distracted, in a good way, by life this past week so will say that when there's just one chemo drug pushed into me, I gain energy through the week and am honestly a little frustrated to have Saturday's treatment looming over me for that limit coming up... Part of life. Appreciating every day I wake up and can have a little fun.
Really missing work but enjoying books, books, and magazines.
Here's some of the recommended stuff from the Look Good Feel Good workshop:
Felt this morning that I was a science experiment with all the hair I was washing off my head... had dealt with it falling out constantly the day before and it was honestly upsetting... Sat and ran my fingers through my hair seeing more and more fall out with each light touch. I just didn't want to go to bed and find huge piles of hair in the morning. So, I contacted my hair stylist (who is out of town) who connected me to someone who was kind enough to shave off my hair. I contacted my friend Amy who attended the haircutting four weeks ago with such care, friendship and support. She dealt with the shaving with good conversation and distraction and took a few pictures too... Good to have her with me to go to a nearby wig shop to check on wig possibilities and helping me see the wig that made me feel like me... a little bit over many other overwhelming choices. What a wonderful friend... What amazing friends I'm surrounded by around the world... feeling blessed.
I gave my son time to be a little in charge before getting it shaved... had him choose the scarf I'd tie around my pink hat after the cut... then when I got home I was wearing hat and scarf, he was happy and then started sniffling about not wanting my hair cut off... but then I asked him if he wanted to see my new wig or to see me bald. He chose the wig and LOVED it, said it was too long since he was now used to shorter hair (hah!) and was comfortable, could tell it helped him. Then at bedtime storytime he told me he was ready to see the baldness... and he was fine. He pet it and then did comparisons between my husband's scalp and mine. I'll be bald or have a fabric cap on at home and have fun with the wig, hats, and more for leaving the apartment... I like options. As I've mentioned before, I'm all about balance, not too much of one thing, just appreciate options. Really good to have a wig that looks like "me" now vs. one I borrowed from CancerLink that made me wince each time I tried it on...
My husband and I chatted as well. He's ridiculously supportive. I love him... so much. He began singing Randy Travis's song lyrics from one of our favorite wedding songs we danced to- Forever and Ever Amen - "But honey, I don't care, I ain't in love with your hair. And if it all fell out, well I'd love you anyway" - teared up but loved him more...
Here's that song for those who don't know it:
Thank you to all who donated to the Give Forward Donation page for me, so grateful and overwhelmed, really overwhelmed, in a good way. Relieved as well to be honest...
My husband went with me to the chemo treatment today, two dose day, and it was good to chill with him (I love hanging out with my husband, a pick me up every day) and be distracted from the powerful poison that was pushed into my body. Also, having him at the quick oncology appointment was a godsend. He asks the questions I always forget to ask, like: When is the next PET scan? Not til 12 weeks go by? Woah. I thought I was due for one in another week... was dreading the bill for it (and also the results)... All scans are out of pocket now, hit the limit on insurance three days after it was "refreshed" at the beginning of the school year. So, glad to have it at the end of chemo treatment... gives more time for the chemo to take action... kill those damn cancer cells, please! What do you mean I possibly have to have more than 3 rounds of chemo in addition to radiation afterwards? All depends on my results... he might want to have one more round... then my oncologist slipped in that sometimes treatments go for 6 months (frickety frack!)... I will take a while to process these tidbits. What is the plan with radiation? So radiation is worrisome since it is so close to my recent May radiation on my right breast, my oncologist thinks it is possible to do it... the local hospital oncologist at the hospital doesn't think it is necessary or safe... but he's known my case barely the amount of time that my oncologist has... not seeing local hospital oncologist again until November. (So begins conflicting information to think on between different doctors. Grateful to have the option and chance I suppose...)
**Hong Kong update, on the way to my treatment for chemo today, my husband and I took the MTR into the Admiralty station. It was tense there. Super tense and a little scary. There is always a huge load of people but then I noticed 8 security guards hovering in the main pathway near MTR shops around this loud group of people who were yelling at others, looking a little vicious, and worrisome. I quickly walked by and my husband thought they were just tourists. Me? No. Honestly, I know there's groups of people who have now been hired to be rabble rousers and create chaos and violence in a peaceful situation. It upsets me and disappoints me... I also know that there is a lot of information flying around that is purposefully being shared to confuse and worry others. Not much else to say about it. To-from treatment was safe for me and my husband was there if there was any risk- which there wasn't... but boy have police and security increased near the protest sites! For those who know nothing about this, sharing another video, this time from a favorite Vlogger- Hank Green, appreciate his information, simplified and not completely accurate about long history of trying to have democracy here in Hong Kong but insightful overall.
Was thinking about how grateful I am for advice I've read and tried... I've received some good advice over the past year with my cancer experience.
1. If you have long hair, cut it short so that it isn't as upsetting when you go bald from chemo. ABSOLUTELY BEST ADVICE for me.
2. Save your eyebrows with contact paper in case yours fall out, the location of eyebrows is hard to remember once they're gone... my oncologist doesn't believe I'll lose my eyebrows- ok, wouldn't complain, shocked when he said this... but still.... anyone have contact paper?!?!
3. Dig deep and find what will bring you to the chemo treatment every week. For me? Honestly? People. I love people and really appreciate companionship, even if I fall asleep, I'm so grateful to have someone there... especially my special friends, husband and... ANTICIPATION my best friend Sheli from Alaska who is visiting in a few weeks and my sister Rachel who is visiting soon after her... so so grateful both will visit Hong Kong and support me and my family and excited... especially hopeful for a little energy during their visits but also will just enjoy quiet time with them as well... two people I've loved and adored for so long... coming here. There's huge anticipation there... huge.
4. Join CancerLink Hong Kong and appreciate the support, don't be deterred by the huge focus on Chinese members. CancerLink gave me a list of wig shops and then told me reasonably priced places... went to one today and appreciated having a friend with me for advice... thanks Amy.
5. Enjoy food and find more ways to get it in your system. I did a happy dance when the nurse told me today that I finally put on weight. Has been a long time- months- since I heard those words. Never knew I'd be so excited to put on the pounds. But honestly, phew. Even more compelled to eat that chocolate cake my friend lovingly made for me for my birthday and Happy Cow ice cream- balanced with vegies, chicken, fruit, fresh juices, etc... I know, all a balance.
6. Listen to what you want and manage other suggestions as you wish. For example, my oncologist thought I was NUTS when I said I was shaving my hair today. He said, "I wouldn't recommend that, you have so much hair, might not all fall out..." I flat out said, "It feels terrible to touch my head and have my hair falling out so much plus it is so itchy I need to free myself now. Why would I wait in hope that it might not all fall out?" He patted my shoulder. He's dealt with many stubborn patients. I follow his directions for medical rules, etc... but personal choices? My realm, respectively.
7. Bring art back into your life. - My beautiful sister brought this up and I thought about what I've enjoyed in the past... I do have an art background, endorsed in Art Ed. (along with Elem. Ed/Special Ed) way back when with more a focus on Art History to be honest... and my favorite things? sketching, fabric arts, origami, and crochet. So... little by little adding them back in. I brought crochet back into my life- brought to treatment today and then realized that it was stupid to even hope, can't move my left hand during the infusions! So I worked a little on crochet this afternoon, happy day. Decided to follow the fantastic illustrator/author Debbie Ridpath Ohi (I interviewed her on my other blog, brilliant and talented woman) on her #Inktober challenge to sketch something each day and post on Instagram... really enjoying it as a new routine... random, low expectations, etc. November is PiBoIdMo- Picture Book Idea Month- another practice I've done for two years, some interesting writing ideas have come from this-- writing is an art in my opinion by the way...
8. Embracing the humor. Laughing with friends who've shared hilarious pictures, videos, and so much else, really grateful for the consistent support in bringing humor into my life. My mom is sending fun videos, my dad is too, and my sister is the neverending source of support, usually through fabulous Pinterest ideas. If I'm feeling down, I do honestly go to finding humor again. Sometimes enough people's frowns on the MTR path will drop me down, funny how I'm influenced by other's moods... so I've watched a few videos friends have shared many times to lighten my mood.
I have many others suggestions I'm grateful I tried... almost like writing my daily gratitude journal here... but seriously, I'm grateful, growing, supported, appreciative, and feeling loved and blessed. Thank you for ALL the support.
Well.
Got thru another day.
No fun to go thru this.
Was grateful for the anti-nausea medicine being pumped in after the benadryl.
Only 1 of 3 meds today.
My life coach suggested I dig deep to find things that will bring me to the clinic every week. My things for this week were: audiobook of Mary Poppins- laughing, time with husband and son afterwards- anticipation, chatting with friends and ride home with friend- support, and expectation that things will hit Monday and Tuesday - hope for an ok weekend. I got there.
My friend told me that this might be an easier week since it was only 1 med but the cumulative effects will slowly make my 'bad' days worse - Monday/Tuesday. So I'll take that anti-nausea medicine quick and early and take it easy as I should.
It was only 4 hours at my oncologist's office vs 7, that was not pleasant at all but ok.
This is the week that hair might start coming out. Oh boy. At least I have many scarves, hats, and such to entertain me once I get it shaved off.
I know it is odd but I'm filling my days. I really miss work. Really miss students. Really miss connections to my colleagues. It isn't fun. I'm enjoying reading when my concentration is there. Enjoying watching shows which I don't have to work too hard at.
I'm turning 41 this Thursday. Oh boy. Turning 40 wasn't great since I had my radical hysterectomy on that day... 41? Chemo treatment effects. Grateful to be here. Grateful to have this chance to celebrate life and be with family and friends but boy, wouldn't mind that future 42 birthday being just a little easier. For me, for my family, and my friends...
A friend who is struggling for a terribly different reason posted on Facebook today something that resonated with me:
I'm not down emotionally right now, actually feeling pretty positive on the day of treatment. Got to go out with my husband and son, try out a new restaurant, wander thru a few shops, pick up craft supplies at the Hong Kong version of a dollar store, and relax with a few shows with my husband tonight. Almost felt like a typical relaxing Saturday afternoon to be honest. I enjoyed every moment, even when my son and I argued over silly things and I had to apologize to my husband about being a grouch this morning when he didn't read my mind. Yes. I was angry and snappy that he didn't read my mind. I'm not a morning person in the first place. Add heading off to chemotherapy and I'm not a fun person to be around, even when I'm trying my best. Poor guy was just in his own world and not worried about me, which he shouldn't have to be 24x7. But talking it out this evening for a few minutes cleared the air, gotta talk things out!!
I went thru a few 'damn it' moments this past week. One was during pre-chemo treatment today when I found out I lost 2 more pounds. Seriously. I'm really eating a LOT and packing it in. Even ate a mini-carton of Happy Cow Coconut Vanilla ice cream tonight... But I'm still losing weight. Damn cancer. My oncologist isn't happy but told me it is normal to lose weight and to "eat". Seriously. I'm freaking eating. Even added in chicken this week which was weird to have back in my diet- treated it as an appetizer as I planned... and I added in bone soup thanks to a friend's generous sharing... My acupuncturist told me to try to drink a cup of it every day. Will try!
The other 'damn it' moment was dealing with the public hospital system for the first time. Good thing- I know what to expect now. Bad thing- I know what to expect now. Blech. I already dislike waiting, and I do have to wait a lot lately. But waiting in an uncomfortable chair, wearing a face mask, seeing 30 other cancer patients, and waiting for 2 hours and 45 minutes wasn't a thrill. The oncologist I met was knowledgeable and plenty experienced and told me that I'm a pretty special case. Yes, special, that's me, I go above and beyond. He said that he wanted me to continue to do chemotherapy through my private doctor so that we didn't interrupt the protocols already set in motion. (Ok) Then he scheduled a follow up appointment in November - scheduled for 10am but he told me to bring my lunch and expect to see him around 2-3pm, seriously!!- to see how I'm doing and whether I qualify for getting radiation through the public system. Basically, he's worried about radiation so close to where I already had it for my breast cancer treatment- me too! But as my wonderful husband said to the doctor when he said this, "Whatever it takes."
Living with Metastatic Breast Cancer - I know I don't have this but it is one of the closest things I can find to what I'm going thru since I'm such a "special" case... Appreciated this video:
And now... moving on. Day by day my friends. THANK YOU for all the support. Grateful. Grateful. Grateful...
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.
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