Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Wednesday, February 27, 2019

Dumbfounded

And humbled.
And stunned.
And grateful.
And relieved.

I spent a big chunk of February scrambling to find a way to fund the wonderfully intense clinical trial that I am so thankful to be in.

I have received some of the kindest rejections of my life, from organizations that truly want to help patients, but for various reasons were not able to help me. We were getting closer to March, and I hadn’t booked any of my March flights yet. I was starting to worry.

So when my dear friend Lily (the same one who gifted me the ruby slippers) brought up the idea of doing a gofundme, I initially balked. I was sure I could find a foundation to cover the expense. But the days marched on, and still nothing. Finally, I gave her my blessing to start it.

And HOLY MOLY!

If you are curious to see what I’m taking about, you can
check it out here.
I am so moved by the response.

What more can you really want from life than to love and be loved? To put some good out into the world? To have a life well lived?
(I just want many more years of all of this!)

The incredible response to this call for help accentuated the strength and the goodness of all the communities (both physical and virtual) that I am so fortunate to be a part of.

And all the notes and messages! Oh my ❤️!

My most sincere thank you.


Here is my view for today. Not too shabby. Those are the Rockies in the background!

My next scans are April 8. So, in the mean time I have decided to assume that the drug is working perfectly. May as well.



Thursday, May 07, 2015

Lung Cancer HOPE Summit

Imagine a room filled with 150 people who have lung cancer, many of whom are stage 4. Do you envision wheelchairs and oxygen tanks? Frailty and sadness? Then, my friend, you clearly did not attend the 5th Annual LUNGevity HOPE Summit in Washington DC this past weekend.

Every year, the LUNGevity Foundation hosts a weekend-long conference for lung cancer survivors and caregivers (you are a "survivor" the day you are diagnosed with cancer). In its first year, 17 survivors attended. This year, that number was 150. The weekend began with a welcome reception Friday night, where I finally got to meet the people who have become my online support community over the past two years. Saturday and Sunday consisted of sessions on topics of interest to people in the lung cancer community — nutrition, surgery, clinical trials, advocacy, and more. Saturday night's dinner was at a lovely outdoor restaurant called the Old Angler's Inn, which provided delicious food and drink as well as live music. We certainly felt pampered! I am very grateful to have received one of the travel grants that LUNGevity provides to help offset the travel and lodging fees. Without this, many of those in attendance would not have been able to come.

Here are my top three highlights of the weekend:


Chris Draft

Chris Draft is a former NFL player who lost his young wife Keasha to lung cancer in 2011. Chris and Keasha founded Team Draft, an organization dedicated to changing the face of lung cancer. Not only is Chris a dynamic and inspiring speaker, but he clearly knows his stuff when it comes to the latest developments in lung cancer research. Thank you, Chris, for all you and your foundation are doing to help those of us living with lung cancer.


John Poirier, PhD

"JT" is an assistant professor at Memorial Sloan Kettering Cancer Center and is one of the researchers on the front lines of making change for the lung cancer community. His passion and dedication to this work comes through clearly in how he speaks about it. In addition to discussing the specific developments that are happening in targeted therapies and immunotherapy, he noted how the rate of change in research has ramped up significantly, with new discoveries coming out at a pace never before seen in lung cancer research. This information explosion provides enormous hope for us.


The People

Without question, the best part of the weekend for me was meeting all of the survivors and their caregivers. Talking with these people, I felt like I was seeing old friends that I had known all my life. In the terrifying early days following my diagnosis, reading the blogs of other people living with lung cancer provided a lifeline that helped me find my way through the fear. To finally meet this group of people in person was both wonderful and surreal. It was luxurious to be able to sit and chat over a meal, and learn even more about these people who had inspired me so much. Click here for a list of their active lung cancer blogs.


Thank you to all the people at LUNGevity who made this weekend happen. I now feel even more connected to the lung cancer community than before. If you are interested in attending a HOPE summit, click here to find out more.

To continue the conversation about hope in lung cancer, join the Lung Cancer Social Media (LCSM) tweetchat at 8 p.m. EST on Thursday, May 7. For more information about the "Spreading Hope for Lung Cancer" tweetchat, visit this link. I hope to see you there!



Originally posted at: www.curetoday.com/community/tori-tomalia/2015/05/lung-cancer-hope-summit




Tuesday, March 31, 2015

Living On Borrowed Time....

There is a constant clock ticking in my mind.

Tick...tick...tick....

"Living on borrowed time...."

I've passed my expiration date.

Tick...tick...tick....

The thing that scares me most, that threatens to tear me away from my family lives inside my body.

Tick...tick...tick....

One day my luck's gonna run out.

Tick...tick...tick....

Ya know what sucks? Having your future torn away from you when you were just digging into your career. When things were looking so bright. Awards rolling in, people taking notice.

When you have a house full of small children counting on you.


(They're still counting on me.)

So what do you do?

You dust yourself off, take stock of what you still CAN do, where you still CAN play an important role, what dreams you STILL dare to dream.

My cancer is well controlled right now.

Right now I have time.

Tick...tick...tick...

Right now I have time to plan for my family's future. To get things in place to take care of them when I'm gone.

(Did you know cancer is expensive?)

Life takes unexpected turns. You adjust. You make the best of it. You still dare to dream big.

This is the only life you get. Even if it is cut drastically short.

So you shift gears. And dream.

And ask for help.

You.

Yes, you sitting at your computer, looking at your phone. I'm talking to you.

You know all those times you have read my blog and asked yourself what you could do to help?

Now's your chance.

I. Need. Your. Help.

I need you to dig down and pledge to support this dream, to support my family, to give cancer the big middle finger.

Right now.

Take out your credit card and pledge.

Every one of you who has read my writings and been touched by me baring my soul as I faced the unimaginable (your word, not mine).

You can make a difference. You can help build a future for this family.

You can help create something that I will get to be a part of for the next months and (dare I hope) few years. Something to live beyond. A legacy.

Tick...tick...tick....

But we need you.

I need you.

Give.

Challenge your friends to give. Tell them why it matters.

Because sometimes life is super crappy and unfair and horrible. But you know what makes it bearable? The people. The people who pick you up when all is lost. The people who allow you to hope for better days. The people who give you the strength to dream.

The people like you.

Now's your chance.

Tick...tick...tick....

Click here. Watch. Give.



Tuesday, February 24, 2015

Breaking Point

My port had stopped working, so they needed to start an I.V. The first nurse had blown two veins and had called in a replacement who was on her way to blowing a third.

In the grand scheme of things, a few needle pokes were nothing. I had been through worse before, and there would be much harder days ahead. But in that moment, it was too much. In that moment, the months of treatment, the endless hospitalization, the constant nausea, and the helplessness were completely overwhelming.  I burst out crying. I can't do this anymore.

My sister, who had been sitting in the chair next to my hospital bed, stood up and walked over to me. She cracked a smile. "Remember that day when we were little kids and we were swimming at the lake, playing Jaws?" I stopped crying and looked at her, confused. She went on to recount in exquisite detail a day years earlier when we had been swimming and had gotten our legs stuck in the weeds and muck at the bottom of the lake and I had thought that a shark was attacking us. She ran around my hospital room, with her fin/elbow on her back, singing the theme from Jaws. Da-dum … da-dum… da-dum…

She had always had a knack for timing, and could change the energy of a room in an instant with her incredible ability to spin a tale. Somewhere between her imitating my 5-year-old squeals of fear and acting out our parents' response, I started laughing so hard the nurse gently said, "Could you please stop shaking the bed?" I toned it down to a hearty chuckle, and before I knew what had happened, the I.V. was in and the fluids were flowing.

Twenty-some years later, my sister is a midwife and every time I think of this story, I know how lucky those women are to have her by their side. In those moments when they feel like they just can't keep going, I am certain that she finds exactly the right words that they need to hear.

People ask me, "How do you cope?" I don't really know the answer, other than I just keep putting one foot in front of the other. But of course, it is not all my doing. I have had times when everything felt like too much and I can't imagine how I could go on. I have been incredibly fortunate to have people in my life, like my sister, who have helped pick up my foot when the next step seemed impossible.

~~~
If you read my last post, "10 Tips for Coping with Scanxiety," then you may recall that I just had my every-three-month scans.

And the results were great!

My amazing targeted med is still going strong after 16 months. There was one little hiccup, in that they found two small blood clots. To treat those, I will be giving myself twice daily shots of a blood thinner for a month, then once daily ad inifinitum. All these needle pokes made me think about the above "Jaws" story from my childhood cancer treatment, and how the cumulative stress of illness can make something as simple as a an I.V. push a person over the edge. Right now I'm feeling healthy (relatively speaking), so I'm fine with some extra needle pokes. But it is easy to see how quickly a lot of little nothings can add up to too much.

Everyone has a breaking point. If we are lucky, we have someone who can guide us through it and help put the pieces back together again.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/02/breaking-point

Tuesday, January 06, 2015

Dedicated to the Caregivers

Last night renewed my admiration for caregivers.

My husband and I were getting ready for bed when we heard a strange noise coming from our daughters' room. We ran downstairs and found one of the three-year-olds standing outside her room, mouth hanging open and making a horrible gagging, coughing sound. At first we thought she was throwing up, but then she kept trying to suck in air, and it almost sounded like she was choking. "Can you breathe?" She shook her head and tears rolled down her cheeks.

My husband donned his superhero cape while I grabbed her coat and hat. He whisked her into the car. I scraped the ice off the windshield while he buckled her into the car seat. And they were off.

I stood there and watched them drive away, feeling totally helpless.

How do caregivers do this?!?

Her sister had woken up, so that snapped me back to my senses.

Okay. Focus.

Get her sister back to sleep.

Run through nightmare scenarios in my head.

Check on the kids.

Feel like throwing up.

Fold laundry.

Check on the kids again.

Stare at the clock.

Calculate how long it takes to get to the ER, check in, see a doctor.

Check my phone to see if I missed a message.

Check on the kids 1,000 times.

Sit down.

Stand up.

Scroll through adorable pictures of the kiddos.

Turn my phone buzzer to max.

Stare off into space.

Jump out of my skin when I get a text.



croup text message


It's just croup, she's going to be okay. They will be home in a few hours.


Finally exhale.

Breathe.

Breathe.

Focus.

Find humidifier.

Clean out humidifier.

Reflect on how caregivers live in this space of terror, being responsible and powerless at the same time.

Feel humbled and amazed.


I've been living with stage 4 lung cancer for a year and a half now. My husband has watched me struggle to breathe, seen me puke my guts out, taken me to countless doctor's appointments, taken over cooking a meal mid-stir when I was too exhausted to go on, run from floor to floor of the hospital parking ramp looking for a wheelchair for me, all the while keeping our household running and parenting our three small children. I have no idea how he does it. In sickness and in heath, indeed.



superhero


To all the caregivers out there, all you unsung superheroes, my admiration for you is greater than ever. Watching someone you love struggle to breathe, battle side effects, and deal with endless pain is its own kind of torture. We patients go through this because we have no choice. You do it out of love.

That, my friends, is truly inspirational.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dedicated-to-the-caregivers

Superhero image courtesy of vectorolie at FreeDigitalPhotos.net

Monday, December 22, 2014

Recipe for Living with Metastatic Cancer

Some of these ingredients may seem hard to find, especially if you are newly diagnosed. But with a little searching (and soul searching), you can create something wonderful to sustain yourself through the hard times.

  • First, you will need three heaping cups of support.
This support can come in a variety flavors, and many blend well together.

The first cup includes your close circle: spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much support can spoil the recipe, it helps to use a website like Lotsa Helping Hands, or an organized friend to coordinate your support.

The second cup is your cancer people. It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve as emotional and practical guides navigating these waters. Explore online groups and organizations as well as in-person support such as The Cancer Support Community, a national organization that provides online support as well as local chapters. Remember that there is also support for your caregiver and children, if you have them, in the form of caregiver support groups and child life specialists for young ones.

The third cup is money. Cancer is expensive, and even if you have good insurance, the co-pays plus the lost work can add up quickly. Consider allowing friends to do a local fundraiser or an online campaign. Many people with advanced cancer also qualify for Social Security Disability, so speak to your hospital social worker about this.

Remember, support is vital to having this recipe work out, so don't skimp on this ingredient because you are scared or ashamed to ask for help.

  • Next, throw in two large handfuls of courage.
Sometimes the courage comes in big chunks, enough to sustain you for weeks. Other times, it is granules that are just enough to keep you going one moment at a time.

It is the courage to ask questions of your doctor, the courage to advocate for yourself if you feel that you are not getting the care and response you need. It is the courage to admit that you need help. It is the courage to go for a second opinion. It is the courage to discuss end-of-life issues and wishes. It is the courage to tell those closest to you about what you are facing, your worries, your dreams and your nightmares. It takes courage to admit that you don't feel positive all the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to keep moving forward.

  • Melt and stir in a stick of knowledge, so that it spreads evenly throughout the mixture.
People vary on the amount of knowledge they like in here, but this ingredient enriches the whole experience.

When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the feeling of control that cancer tears away. Knowledge helps you know what expect, how to plan for what could go wrong, what the Plan B will be if/when this treatment stops working. With knowledge you can learn about clinical trials that may prove promising (even potentially lifesaving) for your particular case. You can find this knowledge from online cancer communities of others with your disease, from staying abreast of the latest research, from pressing your doctors for more information, and from talking to others professionals in the field.

  • Throw in a dash of denial.
Without just a touch of this, the flavors can sour.

Sometimes the intensity of a stage 4 diagnosis can be simply overwhelming. I have found that I can't spend all my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer exists, forget this thing living inside of me. So go ahead, splash in some denial – and if you're having one of those days, pour in the whole bottle. I won't tell.


  • Finally, cover the whole thing with a generous dusting of hope.
This final ingredient pulls the flavors together and makes it all palatable.

Never underestimate the power of hope. In the darkest times, it can provide a single ray of light that keeps you moving forward. It could be the hope that you make it into a clinical trial, or that this next treatment buys you some more time, or that you will make it to the next birthday, or that you might just be the outlier that blows the statistics out of the water.

~~~
Of course, there is no one recipe that works for everyone. These are the things that have helped me navigate the emotional minefield of this disease. What about you? What ingredients do you put in your mix?



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer