Birthday girl with her cupcake sweater- couldn't get the cupcake
earrines in the shot, sigh... Hi to my great brother-in-law as well...
So, it has been almost two months since I began my immunotherapy, tumultous months with the stinking feeding tube added in.
Last week my friend, thanks Catherine!, found me the powdered version of pocari sweat, happy day, saves money, reduces plastic bottles, thrilled... I'm still taking in Gatorade as well... I'm so happy to be avoiding dehydration for two weeks now, it is a relief. NO bags of fluid going into my veins, hooray!! If I could say the same for the constipation and coughing I'd be thrilled but I'm working on those.
I was able to go to work all this past week which I know isn't a big deal, but for me... it was. I so enjoy having enough stamina... and also am resting at the end of each day a huge amount.
It was fun to see family this week for my sister's birthday (Happy Birthday Rachel!!!) and was weird at the same time to not see my parents after consistently during the week after having them help me so often during past weeks. Grateful for their support.
Cheese!
I'm thrilled it is December but also overwhelmed since my kiddo has a big birthday next weekend... he's such a big boy and growing so fast. So grateful to be here for it...
Today was a good day. Sure I still needed a mid-day rest. Sure I still am exhausted. I did get Nivolumab this morning with my friend Catherine. We had a good time chatting... it was the first time in a while I could actually have a sustained conversation, such a relief to be able to communicate! I also got to find some medicine that my naturopathic dr. suggested for the cough and stamina as well.
When I woke up this morning I had the realization that I now can sleep on my back again. I've been unable to do this for months- since the tumor in my back created such pressure I was in pain even lying down that way. I am taking Advil on a regular basis as my gastro-enterologist recommended, might be that reason... BUT Could this mean that the tumor is shrinking? I should hope so. Nivolumab, do your best please. I'm trying to pave the way!
I'm trying to eat. I can take little baby/bird bites and water in between and can get 1/8 of what I used to into my body- leads to a good takeaway container but still I'm not "eating" like I'd dream of... shall see. I do now weigh in at 122 pounds... super exciting, over 120 again is a start towards healthy!!
I'm working to take quiet time, meditation time, restful moments. Sometimes that's hard because all I want to do is zone out and watch a tv show, but I'm trying.
Love my mom...
I found out that my oncologist wants to do a PET scan, sigh. I was really hoping for a CT but ok. I'm scheduled for this Thursday to get one done. PET scans suck to be honest... fasting, isolation, needles, but I'll get thru yet another one- 2nd one here in Oregon, 5th one overall I've had...
The following Tuesday I'll see my oncologist and go over the results of the test. Here's hoping for good ones. I won't go alone (my mom will come, she is very good at hearing EVERYTHING said). Never again will I go alone to an appointment with PET scan results. Learned my lesson on that last August.
Well... going to rest again now. Read a few good books recently and am loving an audiobook I'm listening to... I was stuck in another one and not enjoying it- solution? Take a break.
Wishing everyone a wonderful holiday season. Hanukah snuck up on us, can't believe it begins tomorrow night. Kiddo is thrilled of course. I'm just struggling to wrap presents for family in other states and think out mailing them, etc. It was fun to sort out what I bought for the holidays since I hadn't thought much about it since July. I do plan gifts way in advance...
Had to go to the dr. for pretty much the whole day on Friday. Somehow, I have an infection (something bladder related?) and also I was dehydrated again.
Sigh. How was I dehydrated? I don't know. Really. I'm drinking water all day. Swallowing water has been much easier lately. And today I had a yoghurt... I don't know what's going on but I am still eating slowly but starting to "eat" again here and there which is a relief. One of the nurses today when she was administering my third dose of Nivolumab said that I needed to not forget how to swallow and then corrected herself realizing that I'm still swallowing...
Was really relieved to get Nivolumab today. And then on Dec. 5th is my 4th dose.... then my oncologist wants to do a CT scan to see about tumors, etc. Crossing my fingers. Staying mostly positive... although this week when I was nearly blacking out again because I was dehydrated was really confusing. Glad I got into the dr on Friday and had things checked out. On Monday I saw my oncologist and she brought up that I might be dehydrated but then said that all the lab work didn't indicate it... so I didn't contradict... but now, if I wake up shaking, almost faint, etc. I'm calling right away to ask for a fluid IV push. I've never liked needles stuck into my arms and getting fluid that way does suck... had to get 2 bags yesterday which took 1 hr and 15 mins each... but well worth it for waking up today without feeling faint. I also had to have a chest x-ray to make sure that I didn't have pneumonia or anything, nope, phew. And the feeding tube was part of the x-ray and everything looks "right" with it- good... now if it would just stop sending pain waves I'd be happy...
I have been losing weight. I admit it. I shifted back to the original formula mix for my feeding tube that has more calories and am trying to eat things that might boost calories as well. Going to start bringing drinks beyond water and formula to school again in the hopes that I can stay hydrated and boost my health. Shall see.
My oncologist told me part of the reason the feeding tube hurts me so much still is that I'm so darn skinny that there's no cushion. So everything is pretty darn sensitive. I've noticed that, especially those days when I'm stuck in bed and feel bruised on my hip because I can only lay on my left side and that hip is just skin and bone... Can't wait to gain weight. I remember when we got home from Hong Kong and I was so proud to finally be at 130 lbs, oh where did I go wrong back then? Oh yeah, ding dong tumors...
Thinks I noticed randomly connected to using the feeding tube:
1. The clamp on the feeding tube is really useful.
2. If you don't have the clamp locked and you're feeding yourself, do not cough. Do not blow your nose. Otherwise you are going to get an explosion of liquid and other things from your stomach. YUCK.
3. I don't "push" my food in, I pour it in a tube thing and then have to wait for it to drain into my stomach. If it is the end of the day, it doesn't go so smooth. What normally takes 15 minutes to feed myself takes 30...
4. If I lean back at an angle, my stomach releases air and makes freaky sounds. (I think they're freaky, as does my mom, my husband on the other hand hasn't said a word.)
5. Do not get distracted when feeding yourself. Especially towards the end when you're really just wanting to be done. That's when mistakes happen and your stomach gets the better of you and water spills all over your jeans mid day at work... sigh.
I look forward to chilling out tomorrow with a few very good visits and then getting back to work without worrying people. On Thursday I called my parents and asked them to accompany me home because I just didn't trust how I was feeling... Sigh. My parents helped me for three days straight with visits and appointments and support. Very grateful. This past week was shoddy for my attendance... Monday was ok, Tuesday I left at 1:30, Wednesday I went to a meeting at noon- couldn't move sooner without feeling faint, Thursday I went to work after noon and stayed til 4 and then had parent support... Friday- missed work. Hate how quickly I'm using up sick hours/days that I'd accumulated so conservatively through the years in my district but thank goodness I have them... very grateful.
So... my focus presently is to figure out things (besides doggone dairy) that will boost my calories but won't make me choke or hurt - tried to eat some noodles yesterday. Whoops. Didn't get stuck/pain in my esophagus but it was close... and as anyone close to me knows, I live for noodles... Sigh. I'll figure out a way.
Thanks for journeying with me as always... quietly getting thru the days.
Feeling a little... tired of my oncologist. Think a break is in order- 8 days away. It hit me last night that I haven't been away from home for four months. I know many people don't get to travel/get away from home at all for years, but for me, I think I'm going a little stir crazy and am so excited to get away a bit.
Today my "counts" were done. Not happy. Not thrilled. Have to go back quickly tomorrow morning for an injection of Neulastim to help boost my white blood cell production. Heard it will hurt in joints, will take some medicine for that as well. I can sneak this treatment in right before my kiddo's birthday celebration... http://www.neulastim.co.nz/what-you-need-to-know/
I did gain weight, I am quite pleased with my progress. The wonderful oncologist nurse who is the most honest and helpful bluntly said to me, "You know, that could be water retention from the Taxal you're on, so let's keep an eye on that..." sigh. I'm still eating double at most meals and trying my best to get healthy food into my system. Stomach isn't always lovely but it is fluxuating.
So, I talked with my oncologist about treatment, gave him the article I'm curious about, and began my 4th round of chemo. Took a really long time, enjoyed a podcast and reading an eBook and snoozing since I was on my own this time. 8:30-2:30... (Good I was on my own though, another day of 6 chemo patients all lined up getting treatment...) I was able to catch the MTR over to my last yoga class with the instructor I like/respect. Have notes, will try to keep up with practices shared. Mindful walking is a good one that I can do anytime with a focus on breathing and peacefulness.
My oncologist pulled another rabbit out of a hat. Super frustrated but so much is unknown you never know. He said today, "So after you're finished with radiation, I would like to do two more rounds of chemotherapy if your body can handle it." I honestly squawked a little and he acted like we'd talked about this before. Hmm. (Husband mentioned that he didn't remember anything about this... Glad I'm not going nuts.) He pointed out that this 4th round is to shrink the tumor and then a 5th and 6th round would be for cleaning up any cancer cells ping ponging around in my body after radiation. Not sure about this white blood cell count going down. Shall see how I'm doing and take things carefully, no assumptions needed.
I'm honestly feeling pretty strong although a few people at the yoga session mentioned I was pale. I think anyone would be pale after sitting in a chair getting chemicals pumped into their body and then speed walking around Central to make it to a yoga class. Shall take it carefully next week. Have permission note to return to work next Wednesday-Friday working full time, then continuing after the holiday. Will take things one day at a time, can't worry about what I don't know, can't fret about energy, will just stay positive about getting to work and enjoy being around people I've missed for three months. My concern is dealing with negative nellies and having to redirect their conversation with their worries about me in every interaction. Already happening right and left and it isn't what I'd like to have conversations about... staying positive is what I want. Shall see, can't control others and their worries, assumptions, and caring concerns. Can just control my reactions, right? I know people have the best of intentions and I also know some will be assuming/wondering things like, "What is Debbie doing back at work? Is she going to faint on us? Can she handle the workload/teaching? Isn't her immune system to weak too be around a school?" I have no idea, can just have positive attitude and enjoy time there with the best of intentions to fulfill work obligations and keep my health as a priority simultaneously. My kiddo has been faithfully introducing germs my way as is my husband who works at another school, so not assuming anything, just going to be careful. Might be slipping a mask on when I see an especially sick group of kiddos, already wrote to my wonderful school nurse and asked for hand sanitizer which I will be applying throughout out the day! I already have things sorted a bit for instruction and am looking forward to catching up with students and staff.
Received this lovely scarf/hat from a wonderful friend-
thanks Debra, perfect timing as it is getting a little chilly now.
I actually went to the store the other day and picked up a few pairs of leggings/pants since I was swimming in pairs I have and a little desperate for different selections,
so happy to find ones that actually fit.
*Yes, I'm noticing my eyebrows and eyelashes are thinning,
part of life... Happy to be here.
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?
Around 11 months ago, I was recovering from my radical hysterectomy and preparing for radiation. Look at me now. Darn cervical cancer leaped into my lung and lymph nodes. Crazy. I'm staying positive, adopting even more healthy practices, and appreciating life... I do consider myself a breast cancer survivor. Funny (not so much so) that my breast cancer March-May '14 feels more like a blip now that I'm dealing with chemo, etc.
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...
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.
Heading out for the day yesterday...
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...
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.
So, I realized I didn't share what happened on my chemotherapy day 1 of 12 day.
Here it goes... 7 hours long...
I checked in at my oncologist's clinic and was immediately weighed and had my temperature checked. I lost two kilos which was really upsetting. Didn't think about how I had cut all my hair since the last time I was on the scale, so perhaps some of the weight loss is from hair??
Vampire time- blood was drawn and analyzed.
I checked in with my oncologist who lectured me about losing weight, this is an ongoing conversation... and also chatted about how my blood is, told me many side effects to the chemo drugs that were going to be pumped into me, discussed other things as well. I forgot to ask why he "upgraded" me from Stage 3 to Stage 4 cancer but found out later it is because of the metastasis.
Then I went to his back room. I've had my blood drawn here so often but I always said to myself, at least I don't have to do chemotherapy. Thought that one too soon.
There are comfortable chairs there. Lounge ones... good thing too since I had to sit for 7 hours. The medicine is operated through a machine plugged into the wall. You can't walk around with it!
My wonderful friend Diane who is an incredible support came around this time... she was there the entire time, we have such fascinating conversations... So grateful she was willing to be there, funny that I brought along books and magazines, never opened them.
The nurse was so lovely. Kind. Patient.
I warned her. "I don't like needles. I have to pee a lot. I'm sorry if that creates complications." She was so easy going every time I had to go to the restroom. Just stopped the meds. Removed the line going into my hand and put a cap on the tube until I got back...
First I got a line in my left hand (which sucks, I'm left handed-- has to be that way since the breast cancer and lung cancer both are in my right side).
Then saline was pumped into me to get going.
Then a little medicine was pumped in.
And a little more...
Then around 10:30 the first chemo was pushed in.
Then around 11:30 the next chemo drug.
Then a little more medicine was pumped in. (Benadryl, etc.- only thing that made me wince, that darn medicine stings when it is going in!)
My friend Susan showed up at 1pm. She wanted to visit, bring Diane lunch, and see how I was doing... plus give me a ride home afterwards, so grateful for her time. Super supportive friend.
Then 1:00-2:30 the final chemo drug. It was fascinating to meet a lab technician I'd seen for a year working in the back room on blood analysis and find out he was a Chinese medicine doctor certified and practicing in Hong Kong. He provides his service to my oncologist's patients- herbs, acupuncture, and more... wow. I'm waiting this week to see my side effects and then checking in with him on Saturday for my next round of chemo. He helped out my friend Diane which was incredible.
I ate lunch.
I was so ready to go at 2:30 when the saline was pumped thru again.
That was when the nurse began lecturing me. For 45 minutes. Seriously. My friend pointed out that I started biting my nails during that time. Why yes, I'm sleepy, tired of being in a chair, and ready to go go go... I don't want to hear about side effects now! But for fourty-five minutes I worked hard to concentrate on all the side effects and careful practices she talked about. I thought to myself, I'm better at reading this stuff, please just give me the paper... but I listened too since she would often offer her sage advice as she went over the paperwork. Unfortunately, she forgot to give me the packet (oops) she popped it back into my file record booklet so I will probably run by the clinic this week to pick it up.
After some lectures, I decided to add organic chicken back into my food plan, just treating meat as an appetizer but doing it to get more protein... I'm eating a ton of food but losing weight. I know cancer has a lot to do with it but still, doing what I need to do. A beautiful friend dropped off chicken broth (bone soup) for me to eat... will add some brown rice noodles to it and have tomorrow. So grateful.
I also enjoyed breaking the rules and eating a piece of whole wheat bread today (gasp) with avocado and smoked salmon on it- what heaven it was to eat! So... there's the update I didn't include in my last post.
Monday- 2 days after chemo was pumped into my veins... I'm having a harder time. Honestly, I'm fatigued, gave in and admitted I was nauseous and took pills, and didn't have as much get-up-and-go energy today. Considered it a feat to eat my meals, shower, and welcome my husband home from Vietnam. He completed the mountain marathon in 12 hours! So proud of him.
I wanted to go to this workshop in the evening after dinner and thought I had enough energy to go and return. Learned a hard lesson... I attended this essential oils workshop for around 45 minutes and realized I was done. I needed to go. So they put a drop of oil on my wrists- Joy- smelled like my grandma, lovely, and I headed out. I wasn't thinking my best. I decided to go to ride the MTR home. Figured I could find a place to sit down and it was only 3 stops. Rush hour. Dream on Debbie. So, I got there, had to stand but found a place to lean and got thru two stops. Then I blacked out/fainted. On the MTR. Many people worried. One woman helped me stand up. I slightly collapsed again and people helped me exit the MTR at my exit. The lovely woman who helped me up walked me over to the guard's station and asked me what I wanted... to call the police? Heck no. (But that's a normal thing to do here.) but I said I needed to sit down. They pulled a chair out of the station for me and for five minutes I cooled off. (Was dripping with sweat.) I then realized I didn't trust my energy level so I called my husband and he came to get me. (Welcome home honey!) I was grateful to be home, humbled, and upset. I chatted with my life coach and discussed decisions, what happened and why. We agreed it was probably a combo beyond just being exhausted- I had started wearing a face mask and felt it was suffocating me. She pointed out that breathing in my CO2 probably wasn't good. I need to practice wearing it at home for a while. I had taken the nausea medicine which can get you dizzy... And I should have taken a taxi home. Lesson learned. The hard way but at least there were wonderfully helpful people around who cared enough to get me to a safe place where I was monitored.
Have snapped a few pictures lately... figured I'd share a few. You can see the clinic and even the meds... not fun but part of my days 11 to go...
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