Please spread the word - Go Fund Me

For those blogger friends who had been following my blog, you would have known that I have been diagnosed with non-smoker stage 4 lung cancer this March. I went through a whole range of cancer drugs approved by Health Canada but nothing worked. The tumours kept spreading got larger and larger.

A new drug treatment that has shown success recently but is only available on a trial basis in the US has finally started showing benefits for me but not without requiring a extremely large amount of money to pay for the US scans/tests, medication, medical staff and an unfortunate and unplanned visit to the emergency in the US.

If you are able, please donate what you can to help recover my expenses and stay alive as long as possible. The anticipated costs to continue treatment will reach at least $310,000CAD. The goal is to give me more time to spend with her family and help ease the financial implications. In addition, my mother has Alzheimer's and I would like to be alive and well enough to participate in my mom's Alzheimer treatment plan.

Please spread the word and share my story to help reach our goal.


http://www.gofundme.com/keep-darmeen-alive

Pikachu girl

My daughter suddenly developed a love of the character Pikachu this summer. For the school year 2018-2019, she bought a yellow Pikichu hoodie and wore it almost daily. She saw that I had some remnant of yellow fleece and begged me to make her a pair of yellow pants to complete the all-yellow Pikachu outfit.

For a few weeks I asked to make sure that she would wear the yellow pants outside - not just for dressing up inside the house. If it's just for dress up then I don't want to waste my limited energy to make the dress up pants. She assured me for a few weeks that she would wear it outside, she would wear it to school.

So today I was feeling well enough to use the sewing machine. I quickly used a pair of my daughter's pants as a template and made the yellow pants. My daughter put the pants on right away with her yellow Pikachu hoodie to go to a family outing. I thought she would look like a giant banana at first but it didn't look that bad. Perhaps she could wear that to school. What do you think?

Learning to make better hats - Fundraising for my Chemo Centre

I have been bitten by the bug to make better hats! I think I'll search through the web to learn about making better and more durable hats. I'll try to learn how to stiffen them and decorate them.

One of the problems of making hats and bags, etc, is that I will end up accumulating too many of them. When I was making lots of bags and jewelry for my Handmade by Lovenicky store, at least I could sell some of them at craft sales or give some of them as gifts. Hats will be harder to sell because of their specific sizes and styles. I guess I could go to my local Chemo Centre and see if chemo patients are interested but it's still kinda awkward perhaps make chemo patients feel uncomfortable that I see them with no hair. (I'm not sensitive about my bald head but hair seems to be very very important to a lot of women).

What do you think I should do? I would like to give the hats as a nice gift or perhaps make a small fundraising event for my local Chemo Centre. How should I approach this?

TV costumes - Frankie Drake Mysteries

It seems I have been hit with 1920 fashion fever! I'm watching this CBC original 1920's drama series 'Frankie Drake Mysteries' and I love the costumes. Of course BBC has the series 'Miss Fisher' with a much more sumptuous fashion collection. I realized that I have already collected a couple of these Oriental-esque outfits myself. And I would probably be able to make another with all the trims that I have been collecting in my stash too! Too bad it would probably be too 'costume-y' to wear them outside. Well, I guess I can still make some wool 1920's style hats for the fall for chemo patients.

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More Chemo Hats - Red Linen Cloche

I'm making more chemo hats! This is a a Red Linen Remnant Cloche - Very easy to make. I lined it with remnant fat quarter cotton fabrics. I had been collecting different types of clasps and applied it to this Cloche. It's very easy and very breezy to wear. Easier than tying a scarf for my head!

Now what other styles of chemo hats can I make?

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.

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.

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......

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!

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!

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.

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!