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!

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........