Cancer: Finally some good news!

I came back from Boston last week with some good news! The trial seemed to be working finally! The large right lung tumour had shrunk in the latest CT scan - not in millimeters but with the naked eye in centimeters! The cancer trial medication doctor agreed that it was proceeding in the positive direction.

The plan is to continue with the trial drug and I will be going to Boston again in Feb. I really hope that the trial drug will come to my home town to cut down cost and time away from my family. My daughter has been asking me not to go to Boston anymore. It's really difficult emotionally for me when my 7 year old beg me not to leave.

But as for the change in my health I thank you Lord, and all the prayers and good vibes from my friends and family! I will continue to pray and I hope my friends/family will continue to pray and send good thoughts for my family and I.


Wishing you all a Healthy and Joyful 2019!! :-)

I have been busy....

I have been busy! I made a whole bunch of fashion jewelry for friends, family and the nurses at the chemo centre. There is 1 male nurse at the chemo centre so I made a few wooden bead things for him to choose from. I'm really enjoying this! It's creative, I love giving gifts to people I know, I love seeing my creations being worn, it keeps me busy from silly thoughts, it used up lots of beading supplies that I have, it requires less physical exertion, etc. It's a perfect pass-time while being ill!

Here are some of the gifts I made. I forgot to take a picture of the 20+ pieces of jewelry that I gave to the chemo centre. My kids drew the designed the fabric ones for me to make and my son asked for the Snoopy:

I made many custom pieces for friends and family because I knew them well and I knew mainly what they like. As for acquaintances, I made mostly earrings as gifts because sizes don't matter much. Necklaces are not as bad but people do have preferences for long or short necklaces. Bracelets are the hardest. I have a very thin wrist so most bracelets fall off me and don't look good. So it's hard to figure out if something will look nice on someone else with a different shape or size of wrists (meaty, bony, prominent bone, etc). And I find that a lot of people will take a lot of fashion risks with their earrings but not so much with the other types of jewelry.

I still haven't heard back from my queries about using my jewelry for fundraising for my local chemo centre. I need to check that again. I would love to raise some funds for chemo centre, even if it's only $100. I need to talk to the chemo nurses for sure.

X'mas decor continues.....

I continue too make decorations for our x'mas tree. I have used up almost all the beading wire:

I guess I need to make some stuffed ornaments now! Or should I go buy some beading wire?

My cancer story on the local newspaper

My cancer journey is now posted on the local online newspaper:

https://www.yorkregion.com/news-story/9066210-markham-mom-with-stage-4-lung-cancer-needs-support-for-u-s-clinical-trials/

I hope this will bring attention to our Go Fund Me Campaign as well as patients like me who are stuck between the provincial health insurance program and no insurance. I'm sure there are lots of patients with serious illnesses like me in Canada, even though we have a basic universal health care program. How do we solve this problem, especially with complicated medical illness like cancer, with medical treatments that advanced much faster than the legislation can follow.

Cancer post - what is my new role?

I'm continuing to go to Boston for the cancer trial drug first week of Dec. The last cycle in Nov resulted in a 'no change' situation - there were no increase in number or size of cancer tumours but also no reduction in number or size either.  It could be taken as an encouraging sign that things are not worse. Or it could be interpreted that the trial drug had stopped working.

The Boston trial only eliminates a participant if the cancer has progressed 2 months in a row - if the cancer tumours have grown in number or sizes. So that seems a while to wait for someone who's not sick enough to lie in bed all day, nor well enough to be able to even change a bedsheet by herself without having a breathing issue.

My mind is coherent enough to be super bored right now but my body is not well enough to resume 95% of what I used to do before my cancer diagnosis. It's a really frustrating place to be for a person who used to be very busy and like being useful. I don't know what my new role should be. I also cannot count on myself each day to be consistent - same energy/health level to deal with the kids or housework. Some days when the kids come home from school, I had the energy to deal with them. Some days I dread the sound of them coming home. How is this inconsistency good for the children? I also don't want them to have a heavy emotional reliant on me in case the cancer takes a turn for the worse quickly and unexpectedly.

I just want to be the old mom again. I can't right now. I don't know what my role is right now. I don't know what to do.............

Refashioned: Plaid wool woven dress to tunic

I entered this plaid wool mix dress late last year into the PatternReview.com contest. I had only worn it once at a school Christmas concert. So I thought it would be more useful as a tunic top. I simply just cut it midriff and I had already worn it twice. Not bad for something that I made a year ago!

Before:

After:

Adding a closure to the Purple Reversible Faux Fur vest

I have been feeling well and not well depending on the day. So when I do feel good on a day I would like to take the opportunity to do something I enjoy: jewelry making, sewing, refashioning, etc.

Since I have to go to Boston now on a monthly basis, I wanted to make the clothes that I currently own more practical. This purple reversible faux fur vest was made late last year. It was warm and cozy except it required a closure. So some quick remnant denim and 2 buttons made the vest warmer and practical:

Before:

After:

Now it's even warmer and cozier to wear!

Chemotherapy hats for fundraising

I sweat shopped myself this weekend and made some chemotherapy hats for funding raising. I'm fundraising for my chemo centre as well as myself. I have made 2 Small sizes and 2 Large sizes. I will make 2 more Medium ones and then move onto tote bags. I think the bags may be easier to sell. I'm going to talk to the chemo nurses on Monday and see what the rules are for fundraising just for the chemo centre. I emailed the local hospital foundation but they didn't reply back. I think I will need to talk to a real person to figure this out.

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

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.

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!

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........

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?

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?

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?

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!