Thursday, June 21, 2018

Do you believe in Angels on Earth?

Since having my 3rd round of Immunotherapy last Wednesday, I have been having lots of uncomfortable symptoms: shortness of breath, lots of coughing, all day/night hot flashes, poor sleeps, poor appetite, etc. All those physical symptoms took a toll on my usually positive mental outlook. For the last few days, I was weepy and feeling like I was losing courage courage in my cancer journey.

Then my dear friend M came to visit me yesterday. She is the kindest, most generous person I have ever known. She was the one who drove me a fair distance for a 4AM MRI appointment. I have never experienced such generosity until then. Unfortunately, her mother also has been diagnosed with a serious illness last month. So she has been busy taking care of her mother and I haven't seen M very often recently. But she continues to reach out to me to see if she could help me in between her time with her mom.

When M visited me yesterday, I was very poorly. I could hardly walk and I was extremely nauseous. We ate together, I cried a bit, she encouraged me with her kind words. She saw that I was tired so she left within the hour.

After M left, I had a very restful 1 hour nap without any hot flashes. Last night I had the best sleep I have had in a week. This morning I had another very restful nap. The frequency of my hot flashes had slowed; the intensity of the hot flashes had subsided. My appetite has improved and so has my mental outlook.

I firmly believe that her short visit yesterday has helped me immensely mentally and physically. She is my Earth Angel. There are some special people in this world that are here to restore our faith in humanity. They are here to give us hope when hope seems to be fading away. I am privileged to have her in my life.

Do you have an Earth Angel in your life?

Monday, June 18, 2018

All day All night Hot flashes

I had my 3rd round of Immunotherapy last Wednesday. Since then, I have been having hot flashes basically every 1.5 hour during the day and night. It is extremely tiresome to have to keep having to wake up and changing my clothes, pillow, sheets, etc.

So I decided to do something practical. During the day, I'm alone in the house - the kids are at school still and my husband is at work. I would just walk around with no top except a thin cotton sheet on. This way when my hot flashes start, I will take off the sheet, eat some ice chips or drink some ice water, and let the hot flash does its thing. After about 20 minutes, I will wipe my whole body down and put the cotton sheet back on. And the cycle continues......

This is workable except when the community nurse visits or when I have medical appointments outside the house. I don't know yet what I'm going to do when I have to leave the house with these ongoing hot flashes. Any ideas for me ladies?

Monday, June 11, 2018

Hot flashes like liquid fire?

I have been having hot flashes/night sweats for about 6 months now. The nurses told me that it could be due to my cancer or menopause or both. All I knew was that I would wake up with a soaking wet shirt, soaking wet pillow and sheets. It is a hassle because then I have to change my shirt and pillow and sheet before continuing to sleep. But I had never felt the hot flash/night sweat in action.....

....until yesterday. I was in a half asleep mode when I felt this liquid fire, seemingly coming from the top of my head, flowing slowly down to my neck, then my arms and torso, my legs and then my feet. My whole body was engulfed in this liquid fire and my body started to sweat profusely. It was the weirdest thing!

So I wonder if any ladies out in the blogsphere could tell me what their hot flashes/night sweats feel like. Does it feel like a liquid fire like this or something else?

Wednesday, June 6, 2018

Another round of brain zapping (Gamma Knife) led to some good news

I had another Stereostatic surgery (a.k.a. brain zapping with radiation, Gamma Knife) last Wednesday. Since then, I had been super tired and basically been sleeping non-stop. If I didn't have to wake up to cook or deal with the kids I'm sure I could have slept 20 hours a day for the last week! The good news is that of the 3 brain lesions in my brain, one has shrunken significantly and one has disappeared. I guess all these treatments are leading somewhere positive finally!

Next week I will have my 3rd round of immunotherapy. I hope it will yield results in the positive direction as well. I don't know if my body is able to handle all these back to back intense treatments or not. I hope so. Some new hair is starting to grow back on my head, my daughter noticed that right away. She is already talking about the different hair styles I could have, etc. She is really a very fun girl to be around.

I have trained my son to do laundry which is a big help for my husband and I. His allowance is tied to a chores list but he prefers doing laundry the most. He is a wonderful boy. I'm very blessed.

My husband has just started a new diet and exercise regime as well. Our family needs him to be as healthy as possible as he is the main pillar of the family right now. I wish I am not so tired all the time so that I can help him more. Perhaps the tiredness will subside soon.

So I'm still all positive in my cancer journey. Looking forward to the treatments and learning new things about myself and my family!

Thursday, May 24, 2018

It's been a while....

I haven't written for a while. Since I wrote last, I went to the Emergency room twice, received another round of Immunotherapy and 1 round of brain Radio Therapy. Since the 1st infusion of Immunotherapy, I had a lot of problems with shortness of breath, constant coughing and pain where the tumour was. Since it was and is such a new drug, the doctors couldn't tell me why my pain is happening and how to manage my pain. I had to do a lot of self-investigation and exploration, etc. I am still in some pain, but nothing like 3 days ago. So I'm hoping that I am finally getting all the serious symptoms more under control than before.

I had a consultation with my prime oncologist a few days ago. I was asking her about life expectancies, et. It was very sobering that she told me that if I had not checked myself into ER on March 13, and started chemo therapy right away on March 27, I would have passed away by now. I appreciated her honesty. Sometimes one doesn't notice how fragile life can be.

Since I'm looking at 1 family gathering milestone at a time as one of the milestones for my cancer journey, the next one coming up is my wedding anniversary this Summer. I hope I will be healthy enough to go out for a fancy nighttime meal with my husband to celebrate.

I'll keep working hard on my Cancer journey!

Tuesday, May 1, 2018

I attended my daughter's birthday party

This past weekend, I attended my daughter's birthday party at an indoor playground. I missed my son's party because I was in the hospital, so I was determined to get myself well enough to attend my daughter's party. Since I was so weak for so many days after the 2nd round of chemo, I really wasn't sure if I was going to make it.

The 2 days before the party, I made sure I ate and drank a lot, rest as much as I could and not get stressed out or rush around. On the day of the party, I rested in my bed until it was time to go to the party. I had a great time mingling with the other parents, and watching the kids having fun. Everything was going great until the 2.5 hour mark when I suddenly felt unwell. Luckily, my brother was able to drive me home quickly. But I did it! I consider it a small win out of this long journey of cancer/treatment, etc.

I think I will just continue to take these little wins each week to keep me focusing on the positive things in this journey. I'm going to have Immunotherapy tomorrow and I hope I won't get too ill from it. It is supposed to be less harsh on the body than chemotherapy. But knowing me, I'll get all sorts of uncommon side effects (e.g. vomiting, extreme shortness of breath, etc) that the nurses won't be expecting. I have prepared a list for tomorrow so that the nurses will have precautions on hand for me.

Thursday, April 26, 2018

Dreaming big....

A few years ago I made a wedding dress for myself because my husband said he wanted have new wedding pictures taken. He was going through a healthy regiment and lost a lot of weight - enough to fit into his wedding suit. So I went through a fun but frenzied period of choosing gowns from my pattern stash, narrowing them down to 3 and made bedsheet muslin versions of them to see which one looked good on me:
Vogue 8285
Simplicity 2639
Eventually I settled on Vogue 2237, which was strange as I was never really big on strapless dresses. I have fairly broad shoulders and back and I thought the straplessness would enhance the broad shoulders. However, the final product was not bad at all:


I used a plain white heavy matte satin for the dress and a 100% cotton broadcloth as the lining and foundation. I wore the cathedral length veil I made when I got married the first time (years ago!) and carried the same bouquet my mother-in-law made years ago (fake flowers are good that way!). I did my own hair and make up. A good friend of ours took pictures of us. It was such a fun and exciting day!

Now I'm dreaming about to do something like that again when I have finally recovered from cancer. It's so fun just doing the planning. I don't think I'll do strapless again. I think I should try another style to learn something new. Off to Pinterest for ideas!!!

Wednesday, April 25, 2018

Still recovering from chemo......

This 2nd round of Chemo has been rough on my body during and after the treatment. I think my oncologist put some seriously heavy dosage and/or mixture this time around. She saw that my tumour didn't shrink (it didn't spread either) after the first round of chemotherapy. I guess she just wanted to crank it up to see if the 2nd round can shrink the tumour.

I am recovering from this round much slower than the 1st round. 3 days after the first round of chemo I was able to move around and my strength was not bad. Today is the 6th day after my 2nd round of chemo and I'm only started to feel better and not tired, short of breath, and weak all day. I left a voicemail with my oncologist to ask her about the 2nd round dosage but she hasn't replied.

My daughter's birthday party is this weekend. I planned it all on my laptop a few weeks ago. I am hoping I'll be well enough to go to her party. But if not, I'm not going to force myself. I will rest at home. The adults at the party will just have to take lots of pictures for me. :-)

Friday, April 20, 2018

After 3 days of Chemo treatment

I have learned a lot about my body after the 3 days Chemo treatment. Since each person's reaction to chemo is different, it's really up to me to figure out what can ease the treatment for myself.

After the traumatic experience on Day 1, on Day 2 I decided to force myself to sit up straight with my head and back pulled slightly forward so that I didn't get into the 'I can't breathe' situation again. It worked well except I was vomiting a lot. I'd rather vomit than not be able to breathe.

Then on Day 3, I knew by then that as soon as the Chemo drugs hit my veins, the top part of my airways would tighten and make it difficult to breathe. I asked for supplementary oxygen to ease my breathing and that worked well. I also sat up straight with my head and neck tilted slightly forward. I only vomited once and the rest of the treatment was uneventful.

My husband suggested that I see a professional about my traumatic experience on Day 1 just so that I don't develop PTSD later. He had been reading up about other cancer patients who developed PTSD a few year after recovering from cancer.

I'm to have a CAT scan next week to see how the chemo had worked. My Oncologist told me that I'm a good candidate for Immunotherapy, a new promising cancer treatment. So what is Immunotherapy?

From the American Cancer Society:

Immunotherapy is treatment that uses certain parts of a person’s immune system to fight diseases such as cancer. This can be done in a couple of ways:
  • Stimulating your own immune system to work harder or smarter to attack cancer cells
  • Giving you immune system components, such as man-made immune system proteins
I am doing more research myself about this new treatment.

I'm now resting at home and still feeling positive and grateful for all the kindness and tangible help I have been receiving. I should feel stronger in a few days.

Wednesday, April 18, 2018

Chemo Round 2 Day 1 - a bit rough

Yesterday I had my Chemo Round 2 Day 1 treatment. It started out a rough and then it got better. I was dozing off in a very comfortable Lazyboy chair at the chemo lab. All of a sudden I had an 'I can't breathe' moment. It only lasted a few seconds. The nurses came running in to give me steroids to open up my airway. I don't think I had ever been that scared in my life. I cried for 10 minutes. I think I scared the other patients at the Chemo lab. For some reason, each time I dozed off after that, I had trouble breathing. So I straightened up the lazy boy, used a sheet they gave me to force my neck and head forward, so my head didn't flop back. And then I dozed off sideways with my elbow on the armrest. That seemed to do the trick and I was able to go through the rest of the 4 hour treatment without incidents.

The nurses also didn't know what happened. They asked me if I was anxious, nervous, troubled when the incident happened,  but I was sleeping and didn't feel particularly anxious. I was enjoying that Lazyboy! Now that I know how to prevent it from happening again, I hope my Chemo session today and tomorrow will go smoothly.


Saturday, April 14, 2018

Hair loss, Hats and headscarves

I'm losing my hair due to Chemotherapy. I decided to just buzz it all off so that it's easier to clean up later.

Luckily I made lots of hats for myself during the last few years:



There are more hats that I didn't blog about. This is all good for the colder weather. But when the weather gets warmer, I think I will more likely be wearing head scarves. No problem there either! I have lots of summery fabrics in my fabric stash that I can just cut and serge the edges to make headscarves.

My daughter seems most concerned about my hair loss. She was worried that I wouldn't "be beautiful anymore". I am teaching her that a person's beauty does not only come from her hair. A person is beautiful because she is kind, compassionate, wise, sure of her own qualities and doesn't wait for others to validate her. A person's positivity can shine through an otherwise ordinary physical appearance which makes the person extremely attractive. I'll keep teaching this to her every day.

I'm also teaching my kids that just because I have cancer, I'm not shying away from society. I'm going about my daily life like everyone else, perhaps a bit slower. We went to a restaurant last night for the first time since I was diagnosed with cancer. I had my headscarf on and that invited some looks from the restaurant patrons at first, especially the children. But after a while, people got used to it and I enjoyed having my family restaurant meal as usual. I want my children to understand that just because someone has a serious illness, she doesn't have to hide from society. Unfortunately this is the same lesson I have teach to my mother. She would like me to hide from society until I have completely recovered with a full head of hair, as if I was never sick before.

Thursday, April 12, 2018

Weight loss

This is another rant.

Before I was ill, I was in the higher end of a healthy weight range for my height and build. I wasn't obsessed with my weight all the time. But like most women, I was looking at my post-birth tummy and wishing it was smaller, or the love handles less prominent.

Now that I'm ill, I have lost a lot of weight. I am at the same weight I was when I was 12 years old. I'm trying to eat a lot and gain weight and muscles back so that I can be closer to my regular weight before the next round of Chemotherapy, which will knock down my overall health again.

I look back at my silly thoughts about my mommy tummy and sighed. This illness has been such an eye opener for me. It teaches me what is really important in life - overall good health, contentment with what one already has, family, friends, love, support, compassion for others, kindness, spirituality.

Cancer has knocked down my physical health. But it has raised my emotional and spiritual well-being. I have not known kindness and compassion from my community like this before. I think it has made me mentally a better person. I think I have become a less cynical and selfish person because of cancer.