journeywithrenee

[journeywithrenee]

December 19, 2017

It’s been a long time since I’ve updated! I’ve been working on a memoir of sorts which I may eventually share if I ever finish it haha. This is going to be my last update on this blog so I’m preparing for some long rambling and a maybe a few tears as I type, I’m not sure yet. 

Today, I finished my last day of chemo, hopefully forever. Tomorrow I will have a doctor’s appointment and they will take my picc line out. It’s official and I’m very excited. 

It’s been humbling sharing my experience with everyone. I’ve never felt so encouraged, loved, and blessed with so many people praying for me. God hears prayers and God 100% heard all of yours. This journey was long and short at the same time. I was diagnosed at the beginning of May and here I am, less than a year later, finishing up my treatment. It’s been less than a year but it also feels like a lifetime. I’ve met so many people and heard so many stories along the way and I can now firmly say that I’ve never been more grateful for life. 

That being said, during a large part my treatment I admittedly was not in the right mindset. After the initial shock and worries wore off, there were a lot of struggles. I struggled with emotions and self worth. I struggled with how to love; especially how to love myself. A potent bitterness consistently clawed at me, finding the weakest part of my mind and took residence there. There were a lot of doubts and insecurities that I drowned in for a better part of my phases.

I’ve touched upon this, even before I got diagnosed with leukemia, but I’ve struggled with self worth for almost my entire life. I looked to others for affirmation of identity and every time (obviously) it would fail me. I pinpoint everything I shouldn’t have done, everything I’ve said wrong, and every embarrassing memory until it’s so overwhelming that I’m paralyzed with self loathing disgust. After getting diagnosed with APL and having gone through the motions for a while the abhorrence really hit hard. 

I stressed a lot about how to define cancer in my life. As I went through treatment I met a lot of people along the way who have battled so fiercely with their disease. They’ve suffered greatly yet their positivity shines despite their hardships. Looking at them made me feel ashamed that I was making such a big deal about having APL. As many of you know, APL has a very high cure rate and the treatment for it is not very strong. Someone told me that it’s not even really “chemo”; it’s that weak. I barely experienced any side effects and even if my blood counts were low, once upon a time, there are fellow leukemia patients with even lower. Now that treatment is done and my leukemia is gone, how can I even tell people that I had cancer? I felt like a huge embarrassment, getting a type of cancer that is just time consuming and  money wasting. 

I also battled a lot with the value I put into friendships. I put friendship on such a high pedestal that I constantly let myself down with my expectations. The utter loneliness I felt consumed me and I kept bottling it in, feeling unable to share how I felt because no one would want to put up with all my problems. I complained a lot about trivial things when I shouldn’t have and eventually I realized that I felt like such a burden. I felt irrelevant and unwanted and those thoughts hurt me greatly. 

In such a state, I looked upon my life and saw nothing. I saw emptiness and failure; I lost the will to fight for anything. I struggled with some serious thoughts and emotions as I was trying to dig myself out of a bottomless pit. 

How silly of me. I pushed aside the only person that could help me because I lost sight of His omnipotence, mercy and unfailing love. I fought so hard with myself that I failed to remember where I should put my worth in.  Even if everyone else fails me, even if I fail myself, God will never fail me. God loves me so much, even if I don’t love myself. He never left me. He will never leave me. No matter how wrong I am, no matter how far I’ve wandered HE STILL CARES. 

My internal conflicts did not disappear overnight. It is still very much present and prominent. However, God constantly reminds me that He is still here. He is a solid rock and I can always depend on Him, no matter how impossible I think it may be. I am human. He is almighty. There is no comparison. Everything about Him is infinitely greater than everything about me and I am SO ok with that. 

About my story, I don’t want to hide it. No matter how insignificant I thought it was, it happened to me for a reason and I want to share. I want to let people know about God’s goodness, grace and mercy. I could’ve gone through all sorts of difficulties but I didn’t because of those things. I shouldn’t feel pity that I didn’t have “enough struggles” to make my story “more compelling”. I should praise Him for all the wonderful things He has done for me and for all the amazing people He’s put in my life. 

There are so many more things that I could say but I will refrain because this post is long enough as it is. Today I celebrate. One chapter of my life is complete and whilst I am still coming to terms with the aftermath of it, I am genuinely grateful. I am very blessed and very fortunate that I was given a second chance at life. 

Today, I said my final goodbyes to the nurses that helped me out so much during my treatment phases. They didn’t just treat me as a patient, they treated me as a friend. They were all so genuinely excited for me, they literally counted down the days I had left of my last phase with me haha. I was asked may times if I would ring “the bell” on my last day of treatment. There’s a tradition for outpatients who finish treatment to ring the “victory bell” (I think that’s what it’s called?). I’m so introverted and shy that I was very reluctantly to do so but my nurses managed to convince me. They all followed me (out of my treatment pod to the other side of the floor!) and cheered as I rang the surprisingly loud bell (Seriously. It was loud.) I hold a lot of bittersweet memories in the hospital but right now I feel so incredibly happy and relieved. Although I still have to take my chemo pills until the 31st, I’d like to say that I’m done and I’m incredibly thankful. 

This Christmas season is a time of quietness and healing for me. I will join in celebrating the birth of our Lord Jesus Christ and I will learn more about humility. Jesus is the ultimate example and I yearn to follow Him; to be a light in the darkness. 

In the future, I will be going to school again and hopefully I will start working soon after. It will take some time and some getting used to but I am looking forward to it. A new year is coming and I will embrace whatever is given to me. 

Everyone, thank you again for everything you have done for me. Thank you for journeying with me, praying for me, and sending me all your love. I realize I may not have fully understood the magnitude of support I’ve received in the past months but I want you to know that I really REALLY appreciate it. Thank you, from the bottom of my heart.

Have a wonderful Christmas and a Happy New Year!

“So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor. Give all your worries and cares to God, for he cares about you.”

1 Peter 5:6-7 (NLT)

Also, here’s a picture of me being surprised at how loud the bell was:

[journeywithrenee]

July 30, 2017

BEFORE YOU START READING

If you haven’t read my previous post, I would like to encourage you to consider donating blood this summer! It will benefit many patients in the various hospitals within Toronto and can save lives. Here is an article about the current shortage of blood:

http://www.cbc.ca/news/canada/toronto/critical-blood-shortage-1.4164669

Truthfully I’ve been putting off writing this because it’s been so long and updates have accumulated since I last wrote. It’s my fault for being lazy haha but I’m back now with a fresh update right off the press. A fair warning: I’m not sure how long this update is going to be but something is telling me that it’s going to be a mini essay. Grab some tea or something as you’ll probably need to sit and read (I mean, if you want to).

Shorter Days

My days at the hospital are shorter now that I’m in consolidation. It also helps that our appointments are always in the wee hours of the morning (okay not THAT early but it’s early for me…) Getting in early usually means getting out early. Blood work and ECGs (something used to monitor my heart) are only done on Mondays and Thursdays. Those days are a little longer but we still get out before rush hour. I now usually have the second half of the day to myself to do what I want to do (which is usually not much because I’m usually rather tired when I get back from the hospital). 

Medical Updates

That being said, this past Tuesday (my birthday) was the last day of my first consolidation phase. I now have 3 ish weeks off before I start my second cycle. I am eating my oral chemo pills during this time off but I do not have to go to the hospital to get chemo through my IV. I go to a clinic three times a week to get my line flushed (just so nothing bad gets into my picc line and infects it). My dressing also gets changed once a week. I’m doing pretty well consider it’s only my first phase. I am experiencing no major side effects which is great. I will talk about this in a subcategory but for now I can proudly say that although I’m more tired than usual, I have not experienced any side effects from the chemo. The only thing that has been a little tricky is my picc line. My skin developed a sudden reaction to the adhesive from the dressing that protects the site (where the pipe uhh, goes into my body LOL) from germs. I got rashes under the dressing as well as around it. I put some prescribed ointment whenever my dressing is changed underneath the dressing. The rashes around the dressing have subsided and the type of dressing has been changed. It’s still kind itchy underneath the dressing as there are still some remaining rashes but it’s nothing that I can’t handle. Fair warning: the picture is kinda gross.

My birthday

As some of you know, my birthday was this past Tuesday aka July 25th aka my last day of chemo for phase 1. Thank you to everyone who wished me a happy birthday! This birthday was a little weird for me. It’s something that I have to repeat to the nurses on the daily (actually literally everywhere in the hospital. It’s for safety reasons ofc) and when the day actually came I was like YUP WOW I’m 22 now. Anyways, I’m incredibly blessed with amazing family and friends. My parents bought me this BOMB NEW LAMP. I’m so stoked about this lamp, it might be the best thing that happened to my room.

this picture doesn’t do it any justice. It has 12 different dimming settings AND there are 5 different types of light. Natural light, cool light, warm light, idk what other light but there are 5 settings. It’s amazing ok?

A group of my close friends surprised me the Sunday before my birthday. They blew up 22 helium balloons as well as many regular ones and hid in my basement, scaring the living daylights out of me. I love them. (they bought me the kpop albums that I’ve been wanting from my favourite group). Did I say I love them? Well I’ll say it again. I love them.

I also received a package from the States from a friend that used to live in Canada. (If you’re reading this I hope it’s okay to post this picture!)

I may have shed a womanly tear or two. 

I received a touching card that also made me cry more than one womanly tear. Why are my friends so amazing? 

Lastly, two of my friends actually dropped by my house on my birthday to give me some cheese tarts from Uncle Tetsu. (Don’t be mad at me Uncle Tetsu cheesecake lovers but I think I like the tarts more.) (Also, Carmen and Tiff, if you’re reading this I hope it’s okay that I post this picture too HAHA)

I’m not sure what my hand is doing and I really need to stand straighter but THANKS GUYS! I love you so much! *sends heart eyes your way*

my “cake” cutting process (although I already too two huge bites as you can see LOL)

Imminent hair loss

It’s not really imminent, it’s already happening. I used to watch movies and stuff where someone had cancer. The sad parts are always when they run their hand through their hair and chunks of hair are tangled in their fingers. WELL THAT’S HAPPENING TO ME RIGHT NOW and even though I said I was ready in my previous blog post I am Not Ready (capital N and R for emphasis).  I fortunately don’t have any bald spots yet, it’s a even hair loss I guess but once it gets really patchy this hair will be gone from my head. Come on Renee, you can do it. 

My carpet after every shower. This amount has now doubled. 

My future plans

Some of you have heard already but I am officially enrolled in an online course for September! I’m excited to get my schooling on again, even though it’s only one course this semester. My hope is that by January, I can take 4 courses or so and be a full time student again.

My days off

Now that I have three weeks off, I’m going to be pre-studying for the course that I’m taking. I’m worried that my brain has not been worked as much as it should’ve been during the past few months. I’ve also picked up bullet journalling/photo journalling again. The process is soothing and it allows me to be creative in my own way. 

this is my title page for the month of August. It’s the first time I’ve drawn something with pencil crayon (I find the medium really hard to work with LOL).

Someone suggested to me that I write a book/memoir about my experience with leukemia and the more I think about it, the more I’m considering doing it. Sometimes I narrate words in my head and it sounds kinda good LOL. Renee the author…I feel like my parents would be the only ones that would buy this book LOL

My wishes came true

I’m going to say it. I ate gon chow ngau ho for the first time since I got diagnosed. 

LOOK AT THIS BEAUTY. 

I also was able to go out for the first time in a really long time. I went to Unionville with my parents and we ate ice cream. Even though I’m mostly still house-ridden I’m glad for opportunities like this.

My mom said I need to change my smile immediately. 

Annoying insurance companies

My chemo pills are were covered by my mom’s insurance company. They’re really pricy and I was glad that they covered it UNTIL they told us that they will no longer cover it. Long story short, I just turned 22. That means I will not be covered anymore unless I am a full time student even though the reason why I need to be covered is the reason why I cannot be a full time student. It’s…frustrating. We’re still sorting it out.

Prayer Requests

Please pray for my parents as they have SO much on their plates right now. Pray that God will give them the wisdom and strength to make it through all of it.

Please pray that something will happen with the annoying insurance company. I feel so hopeless about the situation

Please pray that I will not cry if I lose all my hair HAHA

Please pray for me as I prepare to start studying again. I’ve never been the greatest student but I want to do well despite the fact that I’ll be studying/going through chemo at the same time. School kinda scares me. 

Thanks for reading friends!

[journeywithrenee]

*TO VIEW THE VIDEO CLICK THE TITLE “HOSPITAL DAYS”*

I’m not going to write much today but you can expect a full blog post sometime later this week!

here’s a short video I tried to make of a typical day at the hospital. Honestly I didn’t film much in the hospital LOL because it was slightly weird and probably a little inappropriate to film too much. 

Anyways, enjoy the bad edited, camera quality AND sound quality HAHA. It sounds better if you use earbuds or something

p.s. yes I use a baby toothbrush because I easily bleed and the bristles are softer. Mine has Mickey and Minnie Mouse on it hehe

[journeywithrenee]

Thursday June 29, 2017

I feel like when I put off updating my blog I don’t want to start because there will be a sudden influx of information and the post will be 10 pages long HAHA

BEFORE YOU START READING

If you haven’t read my previous post, I would like to encourage you to consider donating blood this summer! It will benefit many patients in the various hospitals within Toronto and can save lives. Here is an article about the current shortage of blood:

http://www.cbc.ca/news/canada/toronto/critical-blood-shortage-1.4164669

Onto today’s post!

So almost two weeks ago, I updated with what my typical day looks like in the hospital. I was honestly expecting to do that for a lot longer than what I actually did it for. Last Wednesday, they took some bone marrow to test. As some of you know, I’m a pretty bad candidate to successfully take bone marrow from. They tried multiple times to perform the bone marrow aspiration which only requires them to take the bone marrow (the liquid part) but they were unsuccessful. (When they first did the procedure to properly diagnose me, they also had many issues and it took a lot longer than it should have haha). Eventually they gave up and performed a biopsy instead which means they took a part of the bone rather than the liquid part. They also drew blood to test as well. 

The procedure is probably the worst part about my leukemia. Taking bone marrow feels super unpleasant ew. They freeze the area (sometimes they don’t freeze enough and will give you more freezing if you feel the needle and say “ow”. Well, at least in my case I said ow HAHA. I’ve been told that people generally yell or swear...yikes) and then drill a needle into your hip, past the fat and muscle to get to the bone. Then they try to drill through the bone to obtain the marrow. Obviously it didn’t work for me so they took a sample of bone from the surface of my hip bone instead. Even if the freezing is enough so that you don’t feel pain, you definitely feel all the sensations. It feels like there’s a construction site on your hip and they’re drilling for gold HAHAHA. (but there’s no gold involved. I wish) Anyways, I need to get it done every three months so yeah, if they warn me in advance (which they didn’t the past two times) I shall definitely ask for prayer xD

ANYWAYS, after they did my biopsy, they gave me some good news! I did not have to continue treatment while they tested my bone to see if I am going into remission. I enjoyed a great week off which consisted of 20% extra sleeping, 20% of time spent with friends and family, 20% snacking and 40% cleaning the house LOL. My mom is overjoyed that my room no longer contains messy piles of unfiled paper on the floor (the life of a procrastinating student). I also rearranged everything in my room and cleared out so many things that I could probably hold my own garage sale. I’m very satisfied with this new layout, I hope I will be able to maintain it ahaha. 

Moving on from another tangent, I went back to the hospital yesterday to see the doctor and review the results of my biopsy. Good news: I am going into remission! That means that I will be moving onto my next step of treatment (The first stage is called induction and the stage I’m moving onto is called consolidation). I will be starting on Monday. I will go through 20 doses of treatment (through my IV) and then I will have 20 doses off. Roughly I will be on treatment for 4 weeks and then I will have 4 weeks off. Meanwhile, I will be taking my oral chemo for 2 weeks and then I will have 2 weeks off. The IV treatment will go for 4 phases. (so 4 weeks on and 4 weeks off x 4). I believe it is 7 phases for the oral chemo (We just need to re-order the pills when we run out). I am very pleased to say I have the long weekend (ish...not Monday haha) off :)

Prayer Requests

Praise the Lord! He has been so good to us. He is so full of grace, love and mercy. Our family has definitely felt the full effect of it during this process.

Continue praying for my parents who are going through this journey with me. 

Thank you for reading!

[journeywithrenee]

Saturday June 17, 2017

Hello everybody!

Today I successfully finished my first week of treatment as an out-patient. 

I’m slightly tired right now so I apologize in advance if things don’t sound coherent or grammatically make sense HAHA.

A typical day

Generally my days consist of waking up at 6:30 and leaving for the hospital after brushing up and breakfast. We plough through insane rush hour traffic (the DVP isn’t called a parkway for nothing) and get to the hospital around 8:15. From there on, I wait in a line to get my blood work done, drop my blood (in tubes) into a nice cardboard box and make my way up to the clinic where I grab a number and wait to be called. Once I am called, I get checked in and then I received a pager so I can, you guessed it, wait again until it starts beeping. Once it starts beeping I go back to the “registration” desk (I’m not sure what else to call it haha) and then they tell me where to go. I finally get into the treatment room and yup, wait for my treatment to infuse into my body. By the time all is said and done, I am out of the hospital, on average, around 4:00. We make our way through insane rush hour traffic #2 back home where I get to plop into my bed around 5:30 for half an hour before I eat dinner. I don’t last very long after that and I’m generally in bed before 10:00. 

An update on side effects

So far, in terms of side effects, I’ve experienced none (PTL!). The treatment does make me tired though so when I’m back at home, I’m like jello for the rest of the evening. Aside from some beginner’s mistakes and minor complications, this week went by rather seamlessly. My only day off is Sunday so I enjoy every bit of it while I can (enjoying usually means rolling around in bed gleefully). 

A trepidation about hair loss

I’ve mentioned multiple times to people that I’m dreading losing my hair. Fun fact, one of the first things I said after I was diagnosed was: “What about my hair???” I’ve had a conversation with another out-patient that has the same type of leukemia as me. She told me she started experiencing hair loss three months into treatment and then it stopped. I think I’ve decided that if my hair loss becomes so prominent that it looks patchy and unappealing, I’m just going to shave my head. Honestly, if you had an opportunity to be bald for a bit, you’d take it too right?

Prayer requests

I have a number of prayer requests today :)

Please pray for my parents. They’ve been selflessly taking care of me, commuting back and forth to the hospital. This past week I can see how exhausted they are and how the travelling and long hours of waiting are taking a toll on their bodies. Please pray that they will find rest and strength in the Lord. Please also pray for their health as they continue this journey with me.

Please pray that I will continue experiencing minimal to no side effects. Sometimes I look around me and hear stories about people who’ve been experiencing some horrible side effects. I feel a sense of guilt sometimes that I’m feeling much better than the patients around me. I know it’s impractical to think that way and that I should praise the Lord for his grace and mercy that He has bestowed upon me but it’s so difficult seeing others suffer.

Please pray that if I do lose hair, I will accept it with confidence (ish) and not cry too much about my new hair-do when it happens HAHA 

Please pray for the nurses in the out-patient unit. They’re so busy, rushing to get everyone their treatment and then out of the clinic. Many of them don’t eat lunch until well past 2:30, yet they’re still so friendly and cheerful. Please pray for energy and renewal as they continuously work long shifts each day.

Renee’s special request

I’ve been asked a lot “What can I do to help?”. I usually respond with “Nothing, I’m well taken care of” because it is true. However, I’ve been thinking a lot and after a conversation with another patient, I have a special request for everyone. Leukemia, as you all know, is a blood related cancer. A lot of patients get blood transfusions and platelet transfusions often as their blood counts are low, myself included. It would really be great if you would consider heading over to your local blood bank and donating. I know it can be kinda scary with the needles and all but I can tell you that by donating, it’s helping a lot of people (not just leukemia patients of course). Thank you in advance if you decide to make this decision!

Update: Here’s an article I just read about a shortage in blood  http://www.cbc.ca/news/canada/toronto/critical-blood-shortage-1.4164669

Anyways, this update turned out to be way longer than expected. I’m going to go plop onto my bed right after this is posted. Goodbye!

[journeywithrenee]

Friday June 9, 2017

Hello friends and family!

Today’s update is going to be a little more brief than my previous ones. I shall explain why...

I’M GOING HOME :)

I receive a very pleasant surprise the other day when my doctor came in and told me that she could very possibly discharge me sometime this week. Obviously I was ecstatic and after much talking (my doctor with a lot of other smart medical people probably HAHA) it was confirmed that I will indeed be discharged tomorrow after I receive my chemo! Praise the Lord!

Many of you who visited me will know that I was expecting to be in the hospital for another two weeks at least. However, I was told that I was doing very well and that there was no reason to keep me in the hospital any longer. I will finish the rest of my induction period as an out patient. That just means that I will be finishing up the first part of my treatment phase not inside a hospital room. I will be commuting to PMH 6 days a week to receive treatment (Sundays are my off days).

Praise the Lord for He is good. I will be continuing to update as my treatment continues into the summer but they will be written in the comfort of my home. 

Thanks for reading!

[journeywithrenee]

Wednesday May 31, 2017

Welcome back to another update from yours truly! 

Physical Updates/Treatment Updates

My fever never came back! I’ve been at a normal temperature all week after the fever fiasco that happened on Friday. On Saturday, I told a nurse that I was sneezing a little more than normal and I found out that my nurses are VERY thorough when it comes to monitoring my health as I got a nose swab and was put into isolation right after I divulged the information haha. Because I told them on a weekend, things tend to run a little slower on weekends in a hospital. I was in isolation (which actually just means that whoever comes into my room has to wear extra gear and will get super hot in said gear) until Monday afternoon. (it turns out I just had some environmental allergies on Saturday that caused some excessive sneezing).

In terms of my vitals, blood counts, liver enzymes etc. it’s been very good! My white blood cell count spiked for a bit (which I said before is not too good at this point in treatment). I’ve been taking pills to bring the number down and I’m pleased to announce that I’ve been taken off those pills today. The numbers are back to normal so I do not need those pills anymore. Because my liver enzymes have been rising and lowering slightly (when I say slightly I mean it’s still in the normal numbers) I’ve been on a full dose of my IV treatment when the number is lower and when the enzymes rise a little, I’m put again on a half dose. It’s been like that for the past few days now where I’m put on a full dose one day and then a half dose the next day. The doctors are trying to figure out the right dosage for me right now. However, I’ve been experiencing minimal side effects from both my pill chemo and my IV chemo which is a blessing from God. 

When I am on treatment, I am unfortunately ver susceptible to fluid retention. That just means that fluid tends to stay in my body and make my joints etc. puffy and swollen (i.e. my legs, ankles, knees). Today was probably most noticeable difference in swelling as it is pretty visible (and I can feel it). I’m trying to move around more (take more walks, stand more, do some exercises etc.) in hopes to lessen the swelling. Because I was put back on treatment recently, they tend to take a certain protocol where they put me on steroids which is also a safety precaution to minimize side effects (I have also been taken off steroids today). However, side effects for steroids means an increased appetite and, you guessed it, more swelling. I got puffy cheeks today haha, need to work on those face exercises. I end this blurb with a big sigh because along with fluid retention and puffiness/swollen-ness comes...yes...you guessed again, weight gain. I’ve been packing on the weight at an...unpleasant rate. The nurses try to make me feel better by saying that it doesn’t look like I’ve been gaining weight haha but I KNOW BETTER. I see the real stats. I just need to suck it up and push all my vain worries to God.  

Spiritually

I’ve really taken a step back and re-examined my outlook on prayer the past three weeks. I think I’m still at the stage where I’m still like “I’m not sure what I’m praying for but I’ll roll with it!” I’ve received two very helpful books on how to pray and different prayers that I can pray every day. It’s still a learning curve for me but prayer has become something of a huge comfort to me as I continue my journey in the hospital. Someone told me that prayer is a lifestyle. I’ve been really trying to embrace this mindset as I’ve never really though about prayer like this before. Obviously I still don’t really know what I’m doing haha but I’m enjoying it so far! I find the prayer I pray the most to myself whether I’m scared of more needle poking, I cannot sleep at night or my neighbour is being too loud (LOL) is “Lord have mercy on me, a sinner.” God’s just like “yup, I’ve bestowed upon you losta mercy because you are most definitely a sinner but don’t worry, I still love you.” Praise the Lord.

Emotionally

I feel like a package hoping to be shipped off at any time. I’ve been guilty at snapping at my parents for predicting the time that I will leave the hospital. I don’t want any false hope nor to I want to mindlessly keep on predicting a day that no one knows when it will come. The doctors don’t know the nurses don’t know, my parents don’t know and I certainly don’t know. God is the only one that knows and I’ve snappily reminded my parents that it’s all in God’s hands. “Can’t we just leave this in God’s hands and stop worrying about it?!” haha, they’ve gotten better with keeping the guesses at a minimum. 

Prayer Requests

Please pray for my body as I continue with treatment, side effects and all the works. I’m living for today because I don’t know what tomorrow will bring me. I’m counting my blessings one by one. 

Please pray specifically for the water retention. Although it is a common side effect, if it continues, it can cause a larger problem for me in the future.

Again, please continue praying for my parents as I am not the only difficult thing they have to deal with in life right now. There are many stresses and unknowns due to my situation. Please pray for courage, strength and renewal. 

Please pray that I will continually grow closer to God and continue to rely on Him.

That is all for now. Thanks for reading! Because of my increased appetite, cravings have increased again and I ALWAYS WANT TO EAT FOOD. I think I’ll go scavenge for a late night snack before I go to sleep. Ciao!

p.s. here is the visitors doc again! https://docs.google.com/spreadsheets/d/1l1lTbYhNvtrcDKF8yZiVMurRpW-qINSQSwDkTXNjXW0/edit#gid=0

[journeywithrenee]

Saturday May 27th, 2017

It’s a mid-day update! I feel strange updating this early haha. Today is going to be a long one!

Update from yesterday and today!

Yesterday evening around 5, my vitals were taken and it showed that I had a fever. YIKES. 38.1 unfortunately. I had to do a blood culture (again) (aka they take lots of blood for testing and I had to be poked with a needle again yuck). I felt relatively fine then to be honest, I thought it was a false alarm again (I had a fever scare before but it turned out to be a faulty machine). They put me on a specific type of antibiotic that I think I was given earlier on in my treatment. It was supposed to help with infection if I did have one (they were taking precautions just in case I did have an infection, it wasn’t confirmed that the source of my fever was an infection). The antibiotic was supposed to infuse for 2 hours but after one hour, I started developing rashes again. At this point in time, my old rashes are still visible on my skin but they are no longer itchy. Yesterday, the new rashes popped up suddenly and very rapidly. I was scratching everywhere and the nurses had to take me off the antibiotic right away (and give me a new allergy band to say that I am allergic to that specific antibiotic haha. My wrist is well decorated right now). 

Moving on from the rashes, the gave me benadryl for the rashes, a new type of steroid/antibiotic in replacement of the first one…and I think that’s all? By this point I was experiencing a serious bout of chills that took 4 hot blankets… (these super awesome blankets that they keep in a thingey that keeps the blankets super nice and warm. Obviously my vocabulary and terminology has not improved even though I am in a hospital where high level vocabulary is being thrown around on a daily basis HAHA). Anyways yes it took 4 hot blankets, a sheet, and 4 more blankets to stop the chills. I eventually drifted off into dreamland around 10, also because the benadryl knocked ME OUT. 

I woke up at 12 ish (I think…I was super drowsy and half asleep haha). They took my temp. and it was definitely a nice boiling fever as I was at 39.4. I remember being slowly raised up in bed because I needed to take another pill and some tylenol but I think I said to the nurse and my dad “I dun feel so good…” and started heaving so a basin was speedily rushed to me and then I puked! It took three containers and by the time the big basin was given to me, I was done puking haha. I felt a lot better after releasing the vomit so I ate some apple sauce (I need something in my stomach to eat one of my meds) and then I ate my pill along with the tylenol. They told me that I was going to get hot soon and BOY DID I GET HOT. I had to change my hospital gown twice between 12 and 6 because THE SWEATS WERE REAL. My pillow was surrounded by a barrier of towel and a blanket was put on my bed so my sweat wouldn’t penetrate the mattress HAHA. 

By 6 I was feeling a lot better. My vitals were taken and my temp. was at 37.1. I ate another apple sauce and took the med that I needed to take…and then I went back to sleep HAHA. apparently I woke up sometime between 10 and 10:30 this morning. My vitals were taken again and my temp was at 36.4! Praise the Lord.

The doc came in and told us that my white blood cells are continually going higher (which is not good at this stage in treatment). He suspected that it was the white blood cell count that caused the fever. The meds that I was on before for the white blood cell count got changed from one pill 4 times a day to 2 pills 3 times a day. 

Right now I’m feeling great to be honestly. I was told that there is a high chance that my temperature will spike again (yikes…) so I think it’s just waiting for the storm to come again haha.

Emotionally

I would like to share this experience carefully with all of you. I do not want to seem ungrateful or rude in anyway. I want to be transparent with all of you as it is difficult for me to express my feelings sometimes. I contemplated for hours whether I should share this with you but I feel the story may help me identify my emotions clearly. This story is only shared to demonstrate what kind of emotional state I was in/experienced suddenly. Yesterday evening I received an unexpected, unannounced and unfortunately unpleasant visit. This individual meant well I know and I appreciate the love and concern. However, the visit took place right before they told me I had a fever and I was already feeling unwell (after waking up from a 2 hour nap). As this person kept speaking, I got slightly offended and sad. This individual eventually got to a topic that I didn’t realize would make me so upset but in the moment I was shaking from anger. They mentioned to myself and my father that everyone in this time and age knows someone in their family that has cancer. I’m sorry, am I just a statistic to you? Am I that family member in my family that has cancer? I know I should not be thinking this way but I was very upset. This person then went on to share their own personal experiences where they knew of family and friends that passed away due to cancer. I sat there in a stunned state of disbelief. I didn’t realize it was something you could speak of so freely in front of a cancer patient. I know patients with APL have a promising future ahead with the best statistics on their side but in the moment, I almost started crying, that’s how mad I was. This person, in my opinion, passed the line when they mentioned a mutual friend who has cancer, saying that they thought that person was going to die from cancer. Not only did my heart hurt for my friend, but it also made me feel insecurity and doubt. What if people think I’m going to die from my cancer too? Thoughts like this swirled in my head. It’s completely irrational and I know I get a little too emotional sometimes but after that visit, I couldn’t stop shaking for a good 10 minutes. This was the first time I felt so hurt, confused and angered in my time here at the hospital.

I’m not sharing this experience with you because I want blame/shame anyone for anything, I just want to be vulnerable and truthful with my emotions with all of you. It’s been two and a half weeks already but this experience is still relatively new to me. Sometimes I forget that I don’t feel well a lot of the time. I need to remind myself that I went from a relatively healthy young woman to a not that healthy anymore young woman. It is still a big shock and emotionally I think I’m still trying to wrap my head around it. After reading this, please don’t think anymore about what I just shared. Please do not talk to anyone about what you read. It is over and in the past. Please do, however, pray for my emotional state as I continue to battle on in this journey. Thank you.

Prayer Requests

If I do get a fever again, please pray for speedy recovery from it all. (last night was a whirlwind of WOW WHAT IS HAPPENING TO RENEE?! haha). 

Please pray that my white blood cell count will go down. If it continues to rise, it will become a greater problem

Please pray for my appetite. It was fine today but the past two days, around dinner, I suddenly lose my appetite. I would very much like to eat a nice dinner tonight :3

Again, please continue pray for my parents haha. My poor dad was thrown into a very stressful night as the fever spiked last night. 

That is all, thank you for reading, thank you for your prayers, thank you for your love, and thank you for thinking of me

[journeywithrenee]

Monday May 22, 2017

Happy Victoria Day!

Before I start my update, I removed my google doc from my facebook but here’s the link again for people who still want to sign up:

https://docs.google.com/spreadsheets/d/1l1lTbYhNvtrcDKF8yZiVMurRpW-qINSQSwDkTXNjXW0/edit#gid=0

Now, onto my update, as you see I haven’t updated in a few days. That is because the past few days have been great but uneventful haha. I was taken off all my treatments and most of my medications because of my liver enzymes going up. We were waiting for it it gradually go down again. 

Yesterday night I started my first treatment again (pills) at half the dose I normally get. I got the same dose this morning as well. After a longer wait for my liver enzyme numbers to get back in, it was decided that I also get to start my second treatment (through the IV drip) again today as well (also at half the dose)! I am relieved that treatment is resuming. Although the nausea went away when we stopped all the treatments, the longer I am sitting around here, the longer it will take for me to go home unfortunately. I haven’t been in my bed for a month now (including the trip. I am still know as that girl that came straight from the airport HAHA) and I miss my bed :(

The second treatment just finished not too long ago. So far there aren’t any side effects. Maybe I’m a little more tired than I was when I was off my treatment but for now there seems to be no side effects. (Praying to God)

The food craving have subsided a little (I still want to eat everything greasy and very not good for me) but I have great friends and family that make me great meals when I really do not want to force down the hospital food HAHA. Fun fact, I went through an hour of watching mukbangs (videos of people eating essentially) and I got so sad that I couldn’t eat any of it. I’m still not sure why I did that to myself. 

Prayer requests for the day!

Please keep praying for my parents! They both have their own ailments that they need to get better from and rest is essential for them to get well. (so they can continue looking after me of course. HAHA just kidding I can look after myself...sometimes. Maybe I miss them a little and want to see them all the time...)

Please continue praying that if I experience side effects, that they will be minimal

The past three nights, I haven’t been getting the best sleep. I’m not sure if it’s because there’s no medication to actually make me drowsy or something else but please pray that I will get good rest tonight.

My last prayer request is specifically for my rashes. I know I said they aren’t that big of an issue (and they still aren’t to be honest). I got steroid cream for them (to be applied one in the morning and once at night) and I have other creams to put on during the day but they’re still itchy...and spreading haha. My whole body looks like a lobster (probably a really un-tasty lobster...). I feel like my lack of sleep could also be because of the itch at night (trying to avoid it but also subconsciously scratching at the rashes). The rashes are spreading downwards and outwards so I’m hoping that they’ll eventually spread out of my body HARHAR. (wishful thinking). Please pray that the itch will lessen so that I won’t be fervently scratching unconsciously in my sleep. 

For those of you who want to see lobster Renee, here are pictures of my leg and arm from today:

that is all, thanks for reading and thanks again for all the prayers, love and support!

[journeywithrenee]

Thursday May 18, 2017

*** I spent half an hour typing this update on my phone and I was nearing the end when my finger slipped and deleted the whole thing 😓 let me try this again. Also please ignore all the typos/spelling errors/horrible formatting. It shall be fixed once I have access to a laptop again.

I felt so great today, for the first time in what seems like forever. I was taken off most of my medications, antibiotics, treatments (I believe for today only) for mainly two reasons. As you read in my previous update I’ve been experiencing some bouts of nausea. They’re trying to pinpoint what it is exactly that is causing the nausea in hopes that they can maneuver around it once the source is found. Admittedly I tended to get nauseous rather easily before I got leukemia as well. HOWEVER if a month of nausea and puking will result in a healed body somewhere down the road it’s SUPER WORTH IT.

The second reason why they stopped everything was because my liver enzymes are climbing at a rapid pace. They’re trying to figure out what is causing the sudden climb. It could also very well be because of my body, which used to be independent of any medications, being suddenly bombarded with tons of meds and treatments left, right and centre. Don’t worry, I’m being monitored very closely and my doc is super awesome and super thorough in investigation haha.

My super great day lead and clear mind lead me to do some thorough thinking of my own, emotionally and spiritually.

Emotionally I have come to realize that my high school motto actually means something to me now (not that it didn’t before HAHA I’m not a high school delinquent…or am I?) Carpe Diem means seize the day. Seize the day because you don’t know what tomorrow will bring you. I enjoyed every single moment of this symptom free day let me tell you. It’s only the beginning of my journey and my trials are far from over. Enjoy what today brings you.

Spiritually this incident really drew me close to God in a way that I would have never thought of before. I feel so much gratitude and love towards my God who was watching me closely every step of the way. Looking back to the events leading up to my diagnosis God really had His protecting hand on my shoulder. When I started experiencing my symptoms, I was on vacation in Europe. We did a lot of walking and stair-climbing etc. which we now realize was not the greatest thing to pair with leukemia haha. God had His arm around me the entire time and I will never stop being grateful and amazed. I often ran out of breath which we jokingly blamed on how unfit I am (real talk though, I am super out of shape). In those moments, God was breathing His breath of strength and renewal into me. With my low blood count it is truly a miracle that I didn’t faint or experience a major accident whilst enjoying my pizza and pasta overseas haha.

Some random updates that are not particularly interesting but I have a lot of time and I kinda like to talk.

Because of my lack of food intake when I was nauseous the past few days, I developed a serious list of things that I crave. It’s important and I set them all as a goal for myself when I get out of the hospital haha. Things on the list but are not limited to:

Gon chow ngau ho

Pizza Hut

Tempura

Instant ramen

Fries from anywhere because I am desperate

Gnocchi with tomato sauce and lotsa cheese

Bacon

Grilled Cheese

a MacDonald’s Junior Chicken 

Prayer requests for today!

I am still nervous about side effects despite me attempting to sound macho just a few paragraphs ago. Please pray that if I do experience side effects, which I surely will, that they will be minimal 😊

Please continue to pray for my parents that they will have strength and energy to deal with me because I am a handful of a child HAHA

Lastly I have been developing some rashes as a side effect of the meds and treatment. They are completely normal! However, they started on my thighs a few days ago and now they cover my entire stomach, back, upper arms along with my hips and thighs. Please pray that I won’t scratch them when I am sleeping HAHA. After this is posted, I will make a separate post with a few pictures of the rashes because I am unfamiliar with editing on tumblr on a phone and I have no idea how to add pictures into a text post on mobile. You can view the photos at this link: https://journeywithrenee.tumblr.com/post/160825155542/rashes-on-my-arm-and-thigh-ft-my-piggy-pyjamas

[journeywithrenee]

Tuesday May 16, 2017

As you have noticed, I haven’t updated much the past few days. I’ve been hit with a huge bout of nausea so it’s mainly been sleeping and puking for me the past few days. I barely ate anything as you could probably guess due to the severity of the nausea I felt. 

They decided to take me temporarily off my second treatment and there is a huge suspicion that it may be the main cause for my nausea. I do feel a lot better right now although nausea still lingers. We shall see what the doctor says tomorrow. The battle against this disease is fought one day at a time. 

Emotionally it’s been rough. (mainly because I can’t eat food and I love food :( haha). I sleep to escape the nausea so I’ve been sleeping over 12 hours every day. 14? 15? maybe more. Whilst in slumber, I do not feel the nausea and can escape to dream land. When I wake up, I experience a bit of “where am I?” before realizing the situation I’m in. Even though it’s been a week, I still wake up dazed and confused and sometimes even sad when I realize I’m in a hospital bed attached to a noisy IV machine. 

Last night when I wandered into dream land, I dreamed about eating a great dish of gon chow ngau ho:

^ this awesome stuff

but when I woke up, I realized I was still very much nauseous and that I really didn’t want to eat that. You can imagine how sad I was. 

I have a cute story to share with you though! The man in the room next to me, we suspect, is along the autistic spectrum. He’s very articulate, however, and the nurses here all adore him (as do we). He was taking a walk the other day when he stopped by my name tag (outside everyone’s door we have our last name written/typed on a piece of paper). If you know me, I love stationery so I completely bling-ed out my own name tag with stickers. He saw it and started speaking to the nurse about how he wanted to decorate his name tag too. My mother and I overheard this conversation and we picked out a few sheets of stickers from my collection. My mom headed out (he was still talking in front of my name tag) and offered him the stickers. He happily accepted and now his name tag is super bling-ed out too hehe. 

Prayer Requests

Please pray for my side effects. Praise the Lord it’s only nausea I’ve been experiencing and nothing worse. Please continue praying for the nausea and that it will diminish or even go away for good (so I can maybe fathom of eating gon chau ngau ho again in the future haha). 

Please pray that the doctor/nurses will pinpoint what it is that is making me nauseous and that it can be dealt with accordingly (obviously stopping my chemo is not the most ideal thing right now). 

Please pray for my parents that God will give them the strength to carry through. Taking care of a cheeky 21 year old like me is a tough mission. 

That is all for now! Thanks for reading! (as I’m not sure when the next update will come haha...)

[journeywithrenee]

Friday May 12th, 2017

I know today is Saturday but hopefully I will be well later on in the evening to update again.

Morning

I remember feeling relatively well in the morning. I did have a headache which I eventually asked for a Tylenol for relief of the symptoms. I also received a care packaged from someone that I cherish dearly and it contained so many things that I love haha (she even knows what brand of stationery I like!! I am so blessed). She also gave me a jar where I can write a little note of thanks to our Lord and Saviour and stick it into the jar. I’m going to attempt to do it every day. 

Afternoon/Evening

I went for a walk for a brief moment before being overcome by some nausea. It wasn’t too bad so I went back to my room to sit for a bit. Everything after that became a blur as the nausea got worse. I was given medicine for the nausea which knocked me out for almost 2 hours. When I woke up, the nausea was still present and I did throw up a little. My nose also started bleeding but after a little nose pinching it stopped. I was also given another type of medicine for the nausea. I ate a little bit of food (fruit and crackers) so I could eat my evening dose of medicine and went back to sleep. I woke up once more at 9:30, feeling nauseous once more. I threw up a little less than the first time, thank goodness. I was given medicine for the nausea again and went back to sleep. In total, I believe I got more than 12 hours of sleep haha. I was obviously waken up at various times throughout the night just to be checked upon etc. but I went back to sleep right away.

This morning

A quick update for today (as of now). I feel fine! No symptoms and importantly no nausea! I will be receiving my third dose of my second treatment around 2-3. Please pray that I will not be nauseous today and if I am that I will catch it in time (to get medicine before I get too nauseous and throw up). Here are some more prayer requests from the family:

(a) As Renee starts to have the symptoms and side effects, please pray that her nausea will be controlled by medications and that she can continue to intake food. (b) Please pray for her appetite that she will continue to have appetite for food. (c) There are so many side effects in all the drugs that she is taking. We cannot name them all as there are too many to list but please pray that the side effects that she does experience will be minimal.  (d)  Please pray for Renee for her physical, emotional, spiritual needs that God’s grace will be sufficient for her to overcome these. (e) Please pray for the doctors, nurses and other people who are helping her that they have the wisdom from God to provide the best care.

[journeywithrenee]

Thursday May 11, 2017

hi again! I’m going to try posting earlier as I am pushing my sleeping schedule earlier as I am more fatigued now. 

Last night

After I last updated my vitals were taken again and I had a fever. It wasn’t too high but because I basically don’t have an immune system, even the little bacterias inside me (that everyone has) could cause an infection. They took (a lot haha) of blood for testing. (unfortunately they had to take it from all sides so although I had my IV, the other arm had to be poked). They also put me on two types of antibiotics. I developed a massive headache after they drew blood but I managed to fall asleep quickly regardless.

Morning

I woke up at 6:30 and no longer had a fever :) I still had somewhat of a headache but it was a lot less severe. Eventually the headache disappeared as time went on. 

Afternoon

I suddenly got very cold and was shivering violently before calling the nurse who gave me a nice heated blanket that stopped the shivering almost instantly haha. Aside from that, I did not experience any other side effects. I also got my first dose of my second treatment through my IV.

Evening

I am slightly tired now so I will be sleeping soon. I’m going to be waken up throughout the night to check vitals, have my antibiotics administered etcc haha. I got the dressing for my picc line changed so now it’s a little sore but not too bad! Aside from these things I feel fine. No side effects experienced so far, praise the Lord :)

Prayer Request:

As I mentioned before, I’m quite nervous about experiencing side effects for my treatment because none of them sound particularly fine. Please pray for minimal side effects and if I do get them that I won’t suffer too much. 

Thanks for reading today’s update!

[journeywithrenee]

Wednesday May 10th, 2017

hello family and friends who may have stumbled across this blog :) this blog is for personal updates about my condition and maybe a witty comment here and there. Warning: capitals are randomly used when I type and these will be a little longer than my minute long update videos.

Morning I woke up bright and early at 5:30 AM today whoops HAHA. I couldn’t go back to sleep but I got a good night’s rest. I was also able to catch up with a friend who’s across the globe right now (perks of waking up early I guess). I felt completely fine and energized :) 

Afternoon

I got my picc line put in today (I actually googled how to spell it and saw a photo that made me super squeamish!...HAHA) which just means I won’t have an annoying thing in the crook of my elbow that didn’t allow for much arm movement. It’s just a way for the hospital to easily give me IV drips, blood transfusions etc. 

Evening

As the video suggested, I got a new stuffed toy! :D HAHA just kidding. Well, someone did bring him from home for me today but that’s not the most excited part. I cut my hair! Not going to lie, I’m kind of super attached to my hair so once my second treatment starts and I may be losing hair, I will shave my head with as minimal crying as possible. HAHA just kidding. Or am I? 

Ironically, I was growing my hair, for the first time ever, to donate to cancer. Please, have a good chuckle because I did. Well, good news! My hair was long enough for me to donate it so we chopped it off and gave me a stylish bob hehe

here are some photos

before the cut

after the chop!

final look ft. stray hair on my shoulder haha

the to-be-donated hair!

I may start my second treatment tomorrow. I do have a prayer request! With all the testing, they’re 90% sure it’s APL but the 10% is still being processed as we speak. Because there is the unknown 10%, I cannot start my second treatment until that gets in. Please pray for it to come quickly (hopefully tomorrow!) and that I can start my second treatment ASAP. Thank you!