Tori Tomalia

Posting since January 01, 1970

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Overview
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Posts I've Started
January 01, 1970

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Comments I've Made
The Other Shoe
September 29, 2015
From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like ...

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Small But Mighty: ROS1ers Unite
September 14, 2015
Yes - the ROS1, ALK and EGFR Acquired Resistance Forum should be excellent. I went to the first one and it was full of excellent information. I recommend anyone with one of those mutation attend!

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Small But Mighty: ROS1ers Unite
September 14, 2015
The times are a-changin' in CancerLand. Gone are the days when you simply had breast cancer, lung cancer or leukemia. Now each has its own specific type and these days you can often discover what precise mutation is driving the cancer. As I discussed in my post "A Personal Take on Personalized Medicine," my cancer is driven by a mutation called ROS1.
 
In many ways, knowing this is a GREAT thing. When we found out what was driving my cancer, I was able to stop chemo and instead take a pill called Xalkori (crizotinib) that has been controlling my cancer for close to two years. That's fantastic! So what's the downside, you may ask?
 
Well, of the over 220,000 new cases of ...

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Seven Chemo Pro Tips
July 07, 2015
Thanks to my awesome targeted medicine, a pill that I take twice a day, it has been almost two years since I have been on IV chemo. While my scans still look great, my hemoglobin is low so I am having several weeks of iron infusions. I am so out of practice with IV medicine that I had forgotten all the hints I picked up during my time in the chair. I couldn't believe all the newbie mistakes I made, so I am writing down some tips here to help myself and you, my lovely readers.

1) Hydrate
Fluids, fluids, fluids. Drink as much as you can the night before and the morning of your infusion. This will make it easier to find a ...

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Fear Less
June 29, 2015
The heart may freeze or it can burn
The pain will ease if I can learn

There is no future
There is no past
Thank God this moment's not the last

There's only us
There's only this
Forget regret — or life is yours to miss.
No other road
No other way
No day but today

 
- Lyrics from"No Day But Today" (from the musical "Rent")
 
Scan time is looming large on the horizon, so in addition to trying to take my own advice (see "10 Tips for Coping with Scanxiety"), I have been ruminating on the meaning of fear.
 
Why is scan time so scary? First, there are lots of little fears that flit around my mind, such as...
Leading Us Through CancerLand
June 24, 2015
What do you wish your doctor knew? CURE has partnered with Inspire in their #IWishMyDoctorKnew campaign. The campaign asked patients and caregivers to finish the sentence, “I wish my doctor knew…” in hopes of creating a more understanding relationship. Please share your story in the discussion group.
You feel a lump.
A bump.
A something-isn't-right.
You walk into the doctor's office.
Your heart is racing.
You can't breathe.
You see your future disappearing before your eyes.
 
Clipboard
Forms
Insurance
Blood pressure
Temperature
Weight
Check
Check
Check
 
I wish my doctor knew
check
I wish my doctor knew
check
I wish my doctor knew
check
What it feels like
check
to be a patient
check
to have to be a patient
check ...

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Cancer as Rebirth
June 16, 2015
Joyce, that is wonderful to hear that your husband is doing so well! May he continue to live well, and may you two enjoy many more years of happiness together. Tori

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Cancer as Rebirth
June 16, 2015
Hi Bob! A ten year survivor, that is music to my ears! Thank you for the well wishes, and may you have many, many more years of health! Tori

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Cancer as Rebirth
June 16, 2015
Mary, I am so grateful to know you, too! The thing I miss most is the blissful ignorance, the ability to assume that I will live a long and healthy life. But, in truth, no one is promised that. Some of us just have that reality thrust in our faces. Tori

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Cancer as Rebirth
June 16, 2015
So true. Some people come to this realization on their own, but many seem to need the "push" of a life-changing event to look a little deeper. Thanks for your comment, and best of luck on your treatment! Tori

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Your Heart's Desire
June 08, 2015
"Can you think what the Mirror of Erised shows us all?" Harry shook his head.

"Let me explain. The happiest man on earth would be able to use the Mirror of Erised like a normal mirror, that is, he would look into it and see himself exactly as he is.... It shows us nothing more or less than the deepest, most desperate desire of our hearts. You, who have never known your family, see them standing around you."
- Dumbledore, from Harry Potter and the Sorcerer's Stone

I am one of the lucky ones who, despite a diagnosis of stage 4 lung cancer and the terrible prognosis that goes along with it, is doing remarkably very well on a targeted medication. Yes, I ...

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Cancer as Rebirth
May 31, 2015
Two. This month marks my second anniversary of living with stage 4 lung cancer. Two years ago at this time, lung cancer burst into my life, kicking and screaming, demanding all of our attention and making our family completely alter our lives to accommodate it.
 
Those first few weeks were a fog. Just make it through this day, this hour, this minute. As the months went on, we gradually grew accustomed to its presence and learned how to live with this new creature in our midst. I learned to take those tentative first steps — to get my legs under me again. A stumble, a trip, then finding the courage to pull myself back up and try again. Trying to find a voice, to speak ...

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The Changing Face of Cancer Care
May 15, 2015
I've had a ringside seat to the evolution of cancer care.

The first time I heard the heart-dropping, stomach-churning, breath-stealing words, "you have cancer," I was 14 years old. The second time I heard them, I was 37.

The first time, a chronic ache in my shoulder turned out to be bone cancer. The second time, a chronic cough turned out to be metastatic lung cancer.

When I was a teenager undergoing chemotherapy for osteosarcoma, I never really thought I was going to die. Me and my teen cancer comrades in the hospital went through hell together. But I naïvely thought we would all get better and go home again one day.

I have seen cancer through an adolescent's eyes, and I ...

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Finding Your Lung Cancer Community
April 02, 2015
A lung cancer friend reminded that I would be remiss not to mention the very active discussion boards on Inspire.com. You will find a wealth of information on there about a number of lung cancer related topics.

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Finding Your Lung Cancer Community
March 29, 2015
You are right, smartpatients.com is another good one. I have only recently started exploring that one, so I'm not that familiar with it yet. I wish I could meet you in person at the Hope Summit, but perhaps in the future our paths will cross. All the best to you!

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Finding Your Lung Cancer Community
March 29, 2015
In the months following my diagnosis with metastatic lung cancer, I felt so desperately lost and alone. I didn't know a single person with this type of cancer, let alone another young mom. As the fog of shock and denial gradually lifted, I ventured into the online waters of cancer groups in an attempt to find others in this same boat. First, I came across a number of blogs written by other young people with lung cancer, and I hung on every written word. Many of those same people have become dear friends to me now, and heartbreakingly some have been taken by this disease.

If you are newly diagnosed or looking to connect with other lung cancer folks, here are a few groups ...

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Freedom's Just Another Word For Sick In A Different Place
March 25, 2015
So glad to hear things are going well! Thank you for sharing your journey.

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Not My Time to Say Goodbye
March 23, 2015
Beautiful post. I, too, never expected to know so many people who have died when I am still in my 30s. But sadly that comes with the territory of living with metastatic cancer. I wish you a long life and the best of luck on targeted treatments. That is what is keeping me alive now. I think we share philosophies on this cancer mess.

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Empowered Patients Change National Cancer Guidelines
March 17, 2015
Agreed, kudos to all of them! It certainly does give hope, and their dedication is inspiring.

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