Friday, August 17, 2018

Chemo Hats for Summer - Butterick 3687

Oh how I miss sewing and creating! I made this floral hat in an hour while being mad at myself for having to late night laundry (long story).

I got tired of trying to tie the headscarves different ways before they become all wonky. I thought a light weight hat would stay on the head better. So hat sewing here we go!

This is an Out of Print hat pattern that I have made before. I made View F. The reason it's a tried and true pattern is because I have a larger than normal head comparing to other women. Usually the large sizes are 23". This one is 24"! Yay for me.

I used a remnant outdoor black and white floral fabric, added a black trim and black buttons, and a white poly cotton broadcloth lining. Everything from my sewing stash. Didn't need to buy anything at all. Voila! I thought at first the floral pattern looked more like a brain but the kids assured me that they saw nothing but floral. And I even brought this hat to my Boston trip!

So remember! When one is sad, mad, or restless, run to your sewing machine!! LOL!


See my review on PatternReview.com.

Monday, August 6, 2018

Another Wedding Anniversary Milestone!

I forgot to mention that I went out with my husband for a wedding anniversary this past weekend! The actual date is in the middle of the week. We went to a slightly hip restaurant that we usually wouldn't go with the kids (e.g. no kid's menu kind of restaurant). We shared a fun appetizer, my husband had a full entree and we shared a yummy dessert. It was fun!

I tried to dress up for it. The problem is that I'm very thin right now. I have a sick person's body. I wore all my self-made stuff for this lunch date: white lace refashioned dress, men's jeans to women cropped refashioned jacket, a pair thrifted red Brazilian made knee high boots to hide my scrawny legs, and a carnelian pendant necklace.
Even the borrowed cane matched my outfit!

  • The ironic thing is that when I was healthy I was trying to have a thinner body. I wasn't obsessed with it. But when I took a shower I would look at my lumps and bumps. Now I understand that I too got deceived and overwhelmed by the daily bombardment of men/women trying to put so much emphasis on 'looking thin' than 'being healthy'. Although I made almost all my clothes (much better fitting than RTW could ever achieve), I was not immune to the overwhelming societal messages. I hope I can keep instilling in my daughter that being healthy is so much more important than looking a certain way that society said we should look like. She tends to be insecure about her looks. In the summer, it's not as much of a problem. But once school starts, I'm worried that the kids at school would make her feel insecure again.

Sunday, August 5, 2018

Simplicity 9457 Girl Ball skirt Done!!

After slaving an afternoon, the Simplicity 9457 Girl Ball skirt is done! I knew I didn't have the type of materials to make it really puffy but my daughter likes it anyway. She asked me to buy her navy blue dressy shoes to go with this skirt. Sorry this is just for dressing up purpose. I'm not buying any shoes for it! Thank goodness I lengthened the skirt because my daughter is a bit tall for her age. I'm not showing the underskirt because it's a real mess! LOL!

My camera is failing me......

Thursday, August 2, 2018

Limited Ingredients for Girl Ball skirt - Simplicity 9457

This is all I can find in my sewing room to make this Girl Ball Skirt:
A bit of blue poly taffeta, small remnant of organza, remnant of very soft tulle, and packs of gold and silver trims.
Is this going to be enough? I hope so! I'm not buying any new materials! Worse comes to worse I have some leather material that I can prop up the underskirt! LOL!

Tuesday, July 31, 2018

Girl's Ball skirt - Simiplicity 9457

While I'm cleaning out my sewing room, my daughter 7, saw the pattern for Simplicity 9457:

Source
She wants me to make that silver ball skirt with 2 black trims. I don't think I have that fabric in my enormous stash. Perhaps I'll just show her my fabric 'store' and ask her to choose a fabric that has enough yardage and a suitable hand. It look easy enough for the top layer, except that I don't have the crinoline underneath to prop up the skirt. Hmm? I really don't want to buy new fabric for this. I will need to figure out what I can McGuyver out of this!

Monday, July 30, 2018

Only Lifeline....or Enjoy Life???

I had a 2nd biopsy of my very big and growing lung tumour a few weeks ago. After sending the sample for investigation, the researchers have found that I have a rare positive RET fusion mutation on my lung tumor. There is currently a clinical trial drug available only at Dana Barber in Boston, MA. It is not available in Canada. I have sent a request for consultation and access to the drug directly to the Research doctor this evening. I am not certain how much the drug will cost or if they will even see me. My cancer is very aggressive and I had already gone through 5 straight days of radiotherapy for my lung and my brain this past week.

I feel like I'm just going through the motion of working towards getting onto this trial. In truth, there are so many cancer clinical trials each month all over North America. How many can a patient chase down? The time, the cost, the chaos in life that follows a clinical trial, etc. I'm working on this getting onto this trial because it was recommended by my prime Oncologist. Otherwise, I don't think I'll go for any trials unless it's within 2 hour drive from my town.

If this will be the last comfortable (physically and mentally little pain) summer I have with my immediate family and beloved friends, let it be a good one. I want to enjoy it. No one is ever ready for death. It often comes too soon. I have had an amazing and fun life comparing to most. I had a look at my Blogger Blog and saw all the fun projects I had done! I can't do much about my health now. I just leave it to the Lord and pray that he will take care of my health, my husband, and my children. All my worrying will do nothing.  He has always given more a lot more than I have prayed for, even contrary to what Western Medicine said I could achieve (fertility treatment).

I am comfortable enough right now. All 5 consecutive days of Lung Radiation seemed to have opened up my airway a little. I'm working out my 1 good lung to reduce my dependence on supplemental oxygen. I am now able to not use supplemental oxygen indoors. I'm going to try to use my own lung in the garden too. I hope I will be able to rid of the extra oxygen then I will be able go out easily - lunch with friends, movies with the kids, etc. Little wins each day goes a long way! Working to not be a prisoner indoors is a good thing! I'm not going to worry about getting on the LOXO 292 trial, or reading up about it every minute of every day. If the Research institute calls upon us, I will do the necessary to go on the trial. If not, it's the Lord's will and I will just enjoy hopefully a few more months in my town.

Sunday, July 15, 2018

Commanding my own fleet...so to speak

In North America, they often call this 'being your own quarterback', which means taking over the ultimate directing responsibility yourself.

In my case, my prime oncologist is on vacation this week. As of last week, it seemed that the cancer has spread to more of my bones and I was on more and more painkillers. I hassled my prime oncologist until she agreed to pull some strings and let me see one of her oncologist friend at another hospital to start using radiation to zap some of the bone cancer away. I thought she was going to 'wait till she comes back from her vacation'. I'm the one who is in pain right now! The cancer is not waiting for anyone's vacation! So I'm 'quarterbacking' my own cancer case, working with 5 oncologists in 4 different hospitals. It feels great to be taking charge of my own case, at least it feels like I am writing my own roadmap for this cancer journey for a short period of time. I'm going to see the radio-oncologist next Monday and I'm going to insist on starting radiotherapy right away. I'm also participating in the screening of a new clinical trial at another hospital. I'm keeping track of all these activities with different doctors, making sure that they get sent my latest scans and data so everyone is on the same page. I'm not relying on the doctors themselves to pass on the info amongst themselves.

I'm also working directly with another palliative care doctor for my pain relief.

As much as I love the universal health care system that we have, there is so much bureaucracy that makes the system slow and sluggish. I can imagine that if I was an elderly patient who is not able to keep track of all the appointments, doctors, jargons, trials, etc, and had no full time younger carer to take care of these things for me, what would I do? I would wait until the doctors return from their vacations (people take summer vacations frequently) and perhaps my condition by then would have worsened so much that treatment options would have been limited.

I'm feeling more hopeful now than I was last week. I hope everything will go well this coming week, meaning that I would be able to make a forceful case to the doctors about my cancer care. Wish me luck!

Sunday, July 8, 2018

A turn for the worse

Just saw my oncologist a few days ago. Not good news.

Lung tumour has grown from 7cm to 11cm.

Cancer spread to ribs and back bone.  Pain felt at bones and ribs making it tricky to sleep.

More coughing.

Right leg involuntary spasm. I have to be very careful walking up and down the stairs.

Immunotherapy has obviously failed.

Next Tuesday I'll be starting a new clinical trial as well as a new targeted therapy drug. Hopefully it will curb the spread of the cancer.

This is a major setback. We had such high hopes for the Immunotherapy drug since I was a 95% match for Prembolizumab. It was extremely disappointing. It didn't help that within the last week I found out that my father also has late stage lung cancer (He smoked for 60 years) and my mom's Alzheimer symptoms has gotten way worse. My husband's uncle has also been diagnosed with lung cancer (also a life long smoker). It just seems to be too much to bear in a few days........

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!