Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Friday, May 15, 2015

The Changing Face of Cancer Care

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 have seen it through the eyes of a mom with three small children.

I was a busy mom, working, going to grad school, and raising our four-year-old son and two-year-old twin daughters. I was tired all the time, but who wouldn't be? And I had a string of chest colds that I just couldn't shake. Or maybe it was asthma. But a shelf full of asthma meds weren't improving my breathing. I stopped going upstairs to tuck my son in at night, too winded to read bedtime stories. I couldn't walk around carrying my little girls anymore; I could hardly walk across the room without panting. It wasn't asthma.

"Mama, I wish you didn't have cancer. It was nicer before you were sick."

I was 15 years old and in the hospital receiving chemo when the anti-nausea drug Zofran was FDA-approved in 1991. It was like the clouds had parted and I finally could see a ray of light through these wretched treatments. Prior to that, we had to take our chemo straight up. I spent my first several months of treatment vomiting all day long. Nothing stayed down, so I was sustained by IV nutrition. I roomed with another young cancer patient at the hospital, and she made it into a game; with each new spew, she would tell her mom to add that to the running tally on the whiteboard. Dark humor gets you through some rough times.

I have been cured of cancer, and I have been terminal.

The whole wing of the hospital was silent the afternoon Karen died. She had been in a coma for several days. At one point her hand moved and her little brother took it as a sign that she was waking up. But then she was gone. She wasn't even 15.

Karen was gone.
Cancer is deadly.
I might die.


It’s the first time mortality — my mortality — really sunk in to my 14-year-old mind.

Learning that I had cancer again seemed like some sort of cruel joke. I had already paid my dues, marched through hell, undergone several painful bone surgeries and been declared 'cured.' But it was different this time. This time it wasn't just about me. I had three beautiful little faces looking up at me, counting on me to be around to wipe their noses, kiss their scraped knees, hold their hands during their first heartbreak, and applaud as they received their diplomas. Each dream of the future was being wiped away with each new metastasis revealed on the scans.

Your spine, your shoulder blade, your hip, your liver.

I had kept in Christmas-card-contact with a few of my teen cancer friends. I used to ask after them at each annual checkup, "How's Rob? How's Linda?" But the answers were not always what I wanted to hear.

"Relapse."

"Decided not to continue treatment."

"Passed away just before Christmas."

I stopped asking after that. In those days, we didn't have online support groups, websites listing clinical trials or even iPads to pass the hours, days, weeks or months in the hospital. We had to check out the VCR in two-hour increments and the whole floor shared that one machine.

Now they can test a tumor and sometimes find the specific mutation driving the cancer. If you're one of the lucky ones, there is a pill to target that mutation. So far, I have been one of the lucky ones. But one day, my luck will run out.

My right arm was saved by a cutting-edge limb salvage procedure. My life is being extended by a brand new targeted therapy.

Then we were going for a cure. Now I have learned that 'cure' is not the only goal in cancer care. I have learned that it is possible for the some people to live with metastatic lung cancer as a chronic disease for months and sometimes years.

Cancer research is moving fast. Will it move fast enough to stay ahead of my cancer? I desperately hope so. There are three little people who are counting on it.




Originally posted at: www.curetoday.com/community/tori-tomalia/2015/05/the-changing-face-of-cancer-care

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

Sunday, November 17, 2013

World Prematurity Day

I am taking a break from talking about lung cancer to write a post in honor of my amazing daughters. These little fighters came into the world at 32 weeks, after several almost-deliveries (and almost-miscarriages) in the preceding few months. Mikaela pulled the ejection cord, as Jason likes to put it, and they were delivered by emergency c-section (like, SUPER emergency c-section) on March 8, 2011.

I had been in the hospital on bed rest since 28 weeks because of placenta previa. I am very thankful that I was in the hospital that night, since I had a massive bleed and the doctors got me from my room, into the surgery suite, and got both girls out in under 10 minutes.

Man, I just can't do anything the easy way, can I?

The girls spent the next 4 weeks in the NICU, hooked up to tubes and monitors. I remember looking at their tiny arms and wondering how in the world the nurses got an IV into those veins. To this day, when I am getting poked (often repeatedly) to put in an IV, I think back on what my little girls went through when they were too small to understand what was going on. If they endured it, who am I to complain?

Thank you, Mikaela and Autumn, for teaching me how to fight, how to thrive, and how to beat the odds. You are growing into such fabulous little people who keep me laughing and bursting with love everyday. I am so lucky to be your mom.


PS - I really didn't want to talk about cancer stuff in this post, but I would be remiss if I did not mention that I got my scan results and they were stable. No more shrinkage detected, but no growth either. As I explained in An Exciting Time to Have Cancer, stable is one of the good results of a scan. And if you had forgotten that I was waiting for scan results, then just forget about this PS and go back to admiring my wonderful little girls.

Thursday, October 17, 2013

Cancerversary

23 years ago today, at age 14, I was diagnosed with osteogenic sarcoma of the right humerus.

It is strange that now I have to refer to that as "the first time I had cancer."

I recall driving to the biopsy early that October morning, when the first fingers of Minnesota winter were really starting to grip the state, covering everything with frost and making the air harsh and brisk. I looked out the window and thought to myself, quite dramatically, "thus begins the winter of my life."

The doctors very strongly suspected that the biopsy would come back positive for cancer, and told me they would be able to tell by looking at the specimen for just a moment under a microscope, so the plan was to keep me under anesthetic and put in my port once they confirmed it was positive. I remember waking up after surgery and feeling for my new port. It was there, so I knew my answer. "Here we go." I fell back into my groggy slumber.

What followed were 11 of the hardest months of my life. I seemed to get every rare complication from the chemo drugs, so much so that at the end of my treatment, one of my oncologists remarked, "When I told you all of the possible side effects, that wasn't meant to be a challenge!" My chemo was all inpatient, with five days in a row of infusion. After every cycle, without fail, my counts would drop dramatically and I would come down with an infection which would keep my in the hospital until it was time for the next chemo cycle. I was so violently ill from the chemo that I was fed via IV for months, and still lost 30 pounds. I spent virtually a whole year in the hospital, a building that was less than two blocks from my home.

I remember arguing passionately on Christmas eve day, begging them to let me go home so that I could wake up in my own bed on Christmas morning. First, they said, I had to prove I could eat and drink. I set to that task with great resolve, and later that afternoon proudly told them that I had kept down half a glass of water and one and a half saltines. At that time, it was a huge accomplishment, and somehow they agreed to let me go home. I spent a lovely 24 hours with my family, opening presents, and having a fairly normal Christmas before checking back into the hospital that night.

Not surprisingly, my second dance with cancer has led me to reflect on that time a lot, and I keep wondering if there are others like me out there who won the battle the first time, then got reenlisted into a whole new fight. At my follow up appointments when I had finished treatment, I used to ask about the other young cancer patients I knew, until one day I was told that two of them had their cancer recur, and one had passed away. I stopped asking after that.

I have only kept in Christmas-card-contact with one of my old cancer buddies, and while I would love to talk to her, I think it would be kind of cruel to call her up and say, "Hey, remember when we went through hell together, then got cured and went on with our lives? Well, it can come back in a whole new form!"

In some ways, I am thankful that I have my first experience to think back on, because I know just how much I can handle (a lot). So far, at least, this hasn't been nearly as terrible as that was. Side effect management has improved by leaps and bounds, and I am currently on a fairly tolerable chemo triplet. I know that things will get a lot harder. But I am also older now and have a lot more life experience. Most importantly, thought, I have three little ones who keep me very grounded in the real world of day-to-day life. They are three small people for whom I would do anything.

Sunday, March 06, 2011

32 Weeks!!!

(Big sigh of relief) We have made it to a major milestone, 32 weeks pregnant (the point at which survival and disability rates greatly improve). I remember when this felt so far away.

So what's the plan now? ... um, no one seems to know. Frankly, I don't think the doctors expected that we would make it this far. So when I asked where we go from here, there was sort of a vague "let's see what happens" response. If things stay just as they are, there is no reason to deliver the girls yet. One doctor said that I might even make it to 36 weeks, and he offhandedly said that then the girls could skip the NICU, stay with me in my room, breast feed right away, and we could all go home together. I think my jaw actually dropped. Another doctor got squirmy at this and said we should focus on trying to get to 34 weeks. I was stunned. We have been bracing ourselves for any number of challenging outcomes, starting back with my first visit from the NICU doctors at 25 weeks, who explained what it would mean to have the girls born so early (in a nutshell, not good). I have accepted that I most likely would not see the girls when they are born as they would be whisked away to the NICU immediately, where they would stay for months. So to think that, after such a crazy pregnancy, there is a possibility that everything could turn out so normal? I feel like I shouldn't even dare hope for that.

So, my new goal is to make it to my birthday with these girls still growing in my belly. On my 35th birthday, I will be 33 weeks and 6 days pregnant. If I go to sleep that night still pregnant, we will have hit the 34 week mark (which is considered "late preterm"). Pretty good birthday wish, I think.

In other news, I have put on just shy of 50 lbs during this pregnancy! Amazing! I am now 1.5x my pre-pregnancy weight. I am one-and-a-half Toris! No wonder it feels like my ribs are trying to split in half.

Good job, little girls. Keep growing strong!

Wednesday, March 02, 2011

Simplicity of Purpose or Life as a Human Incubator

These past few weeks in the hospital have given me a very simplified way of approaching each day. Essentially, my one purpose right now it to keep the girls safe for as long as I possibly can. It is a strange feeling, knowing that I really only have one goal each day. And every morning that I wake up still pregnant, I have completed my goal for the previous day. It kind of reminds me of when I was on chemo (though that was WAAAAY more crappy) in that my one goal then was to get better. Every day that I got through another treatment or got over another infection brought me one step closer to a healthy outcome.

We are at 31.5 weeks now, so every day I feel a tiny bit less terrified. I realized that I had my first hospitalization at the beginning of December, which means that we've been living with this worry/danger/stress constantly hanging over our heads for three months. Yeah, it hasn't been a very fun pregnancy!

Living in the hospital has given me a deeper understanding of what it feels like to be a two-year-old. As I mentioned in the last post, one of the few things I'm allowed to do is walk across the hall to refill my water cup. So when a thoughtful nurse goes and gets a fresh cup of water for me, I kind of feel like stomping my feet and yelling, "I can do it BY MYSELF!" the way a certain two year old I know does. Most of the time I try to jokingly explain that I have permission to go to the water area so I really look forward to it, but it gets tiresome to explain that every 8 or 12 hours at shift change.

On a happier note, this hospitalization has shown me that we really have become part of a community here. I'm not sure when I stopped thinking of myself as being new in town, but somewhere along the way my family developed a nice group of people who have shown their lovely support through this trying time. Thank you to everyone!

Thursday, February 24, 2011

Thoughts from the Minimum Security Prison

I was joking with Jason that I kinda feel like I'm in a minimum security prison. He told me that he saw a special on a minimum security prison in Canada. "Oh, no," he said, "they have MUCH more freedom than you do."

I have "bathroom privileges" (really, that's what they are called, as if I have done something to earn the right to use the bathroom and if I misbehave that right could be revoked), and after some convincing I got permission to go across the hall to refill my water cup.

It's not so bad, really. I have a room with windows, and fairly decent food (though it gets very repetitive), and I've had lots of people stop by and drop off treats, movies, magazines and books to occupy my time. I'm very, very thankful that I am still pregnant and that the girls are growing just as they should be. We are at 30.5 weeks now, getting closer and closer to the safe(r) zone of 32 weeks.

The worst part is being away from "my guys" and I miss all sorts of little stuff. I miss reading Z his bedtime stories, and he was just starting to search for the goldbug in "Car and Trucks and Things That Go," which was my absolute favorite thing about the Richard Scarry books when I was a kid. I am astounded at how well Jason is juggling everything. I mean, wow. I always knew he was a great guy, but I appreciate him now more than ever. They visit me daily which is the highlight of my day, but I still miss all the little incidental moments of day to day life with them.

It feels strange not being able to plan anything. There is this vague worry constantly hanging over my head, knowing that any day I might have to have an emergency c-section, so it is hard to think much beyond one day at a time.

Ultimately, in this current moment both the girls and I are healthy. And that is a good thing.

Friday, February 11, 2011

Question: Where's Tori?

Answer: In the hospital. Yes, this pregnancy has been quite crazy, and now it looks like I will be in the hospital until the girls are born, which will hopefully be no sooner than early March. Jason is doing an amazing job in the "single dad" role, and I am incredibly thankful for the support I have from my friends and family, particularly Melissa who let Jason drop Zander off at 4 am so he could join me in the hospital (thankfully things calmed down and I am still pregnant). Wow, I'm a very lucky person.

Thank you for all the prayers, well-wishes, positive thoughts, meditations etc etc that people have sent. I hope to keep these girls safe inside until we at least reach 32 weeks.