Cari's Story

Cari and Her Husband

Cari was 28 when she was diagnosed with osteosarcoma at the tibia. She had chemotherapy and surgery, followed by lung metastases and a local recurrence that resulted in amputation. She also had a baby after chemotherapy!

I actually knew I had a tumor in my leg, because when I was 12, I cracked it while I was running. The specialist at that time said that it was benign and not to worry about it, because something that is benign would not turn malignant. So life went on. In January of 2003, my shin and knee were extremely swollen and I began to have daily pain that would even wake me up at night, but being the stubborn person that I am, I didn’t actually go into the doctor and complain until June 2003. Eventually I was referred to a specialist who (in August) said the best thing to do was a biopsy so we would know what we were dealing with.

A week after the biopsy I was told it was high-grade osteosarcoma. I was actually told on a Friday and by Monday I had an Oncologist, was in the hospital on Wednesday having a catheter placed in my chest and was to report on Monday morning for my first round of chemotherapy. The first day of chemo was September 19, 2004. WOW what a week! The initial tests done were an MRI, CT scan, Bone Scan and many different X-Rays. It all happened so fast – I actually don’t know how I handled it.

Treatment

I had seven rounds of chemotherapy before surgery. The chemos were Doxorubicin, Ifosfamide, high-dose Methotrexate with Leucovorin rescue, and Cisplatin. I had about three weeks off before surgery so I would have enough strength to make it through. Surgery was on January 6, 2004. I had limb salvage surgery which consists of inserting a titanium rod into my femur, taking out my knee and replacing it with a prosthetic knee and removing my tibia and in it place titanium rod. I was in the hospital for seven days, pretty much drugged and was not allowed to bare any weight on my leg until March.

Two weeks after surgery I reported back to my oncologist for the next 13 rounds of chemo. They were the same drugs as listed above plus Etoposide. Out of the 13 rounds I was supposed to have, I only had five because my body would no longer recover after each treatment. My blood counts would remain too low and the risk of infection was too great, so my doc and I decided we would have to take the chance and end chemo. My last chemo was June 23, 2004.

Metastasis

I had CT Scans every three months for the first year, then went to every six months, and then I was about to make it to once a year when my scan done in February 2007 showed a spot on my lung. My Oncologist was hopeful that it was nothing because by this time I had 3 years without any signs of mets or recurrence. So he decided to wait and do another scan in a month to see if there were any changes to it. In March I had another CT scan and found out the "spot" had doubled in size. We still didn't know what we were dealing with, but the consensus was to have it removed. So in March of 2007, they removed the bottom half of my right lung. Three days later I got the call that it was a met. Since that was the only one we were dealing with, we decided that surgery to remove it was the only course of action to take at that time.

Marriage and a Baby...and Recurrence

In October 2008, I married the man of my dreams. I never thought that someone would come into my life and want to deal with all the things that sarcoma brings, but not only did he come into my life and I married him, but we also found out we were expecting a baby. Cari and Her FamilyMy Oncologist was shocked to say the least, since chemo I never had a menstrual cycle so we just assumed I was pre-menopausal and that pregnancy would not be in my cards. So not only was my oncologist surprised, but it took seven positive home pregnancy tests for me to even begin to think that it was true. My beautiful baby boy was born February 21, 2009 by C-Section. I had such little use of my knee that my OB and Surgeon both thought that a C-Section would be the safest for me, because they didn't think I would be able to get into a position to actually push him out.

Before I left the hospital after having my boy I had a CT scan because I wasn't able to have any during the nine months. I found out two days later had another met. In March 2009, I went in for the removal of my middle lobe of my right lung. The surgery was tough, but honestly being away from my newborn baby for the four days I was in the hospital was the WORST!!! I couldn't think of anything else except for getting out of there.

Once discharged from that surgery I was to report to my lung surgeon, so he could do a needle biopsy of this funny bump that was growing out of my ankle. Two days later received a call that it was a recurrence of the high grade osteosarcoma. The only option at this point was to do an above-knee amputation. So, in April 2009, I checked back into the hospital and had my right leg amputated above the knee.

Ongoing Recovery

I have had MANY years of physical therapy, initially to help with the lack of movement with my knee, to help strengthening my back (because of the way I walked my back has some issues), then to help with the use of a prosthesis. I still see a physical therapist to help with my back and to try and help my gait, so hopefully someday I will learn to use my legs equally instead of placing on my weight on my left side. It has been eight years of favoring the right leg, so it has taken me awhile to learn to use it again.

Life Now

"Since my diagnosis I have learned that my body will continue to surprise me in so many ways. I have learned that even though a doctor might tell me something, there is always another side to it. And I have learned that miracles do happen and good things can still happen in my life."

Things are definitely different now. I can’t say in a bad way though, just different. I miss things that I used to be able to do like playing volleyball, jumping or walking, running, crawling and squatting. I still have trouble using the prosthesis, so normal activities take me awhile. I walk slower, I get tired very easily and I have a lot of anxiety when I am on terrain that I am not familiar with. I don't like walking down hills; climbing is very hard; walking on sand is hard; daily activity is HARD. But I have learned so much more about life. I enjoy friends and family. I listen to friends or family complain about things that now I feel are just not worth thinking about. My focus is my boy who is three now, and I try to do everything that I can to make his day happy.

I still suffer from nerve pain and phantom pain and have days when I am really just ready to give up. I get so discouraged and depressed when my son is running around the grass playing and I can't join him. It breaks my heart when he says, "Mommy you get me now," and I have to say, "Sorry baby, but Mommy can't run after you." I try not to let those days overwhelm me because I could very easily just sit and cry all day. I do what I can do, I am ALIVE and I am very thankful for that, and I am able to see my son grow, laugh and love. That is something that I thought I would never experience and now I have the HONOR to be there every day for him. He always makes me laugh, especially when he tries to fix mommy's leg (I think he is going to grow up and be a prostheticist.)

Thoughts for New Patients

Just take each day as it comes. I thought that once I knew what to expect from the chemotherapy that I would be able to plan for it each time I had a repeat. But the more chemo I had the more different my body would react to it. I would never know what to expect (in my situation), even though it was the same chemotherapies and the same doses. At the beginning I tried to be "strong" and fight through the nausea, vomiting, fatigue and all the other wonderful side effects, but then I realized there is no reason to fight through it. TAKE MEDICATIONS to help RELIEVE THE EFFECTS!!! If one doesn’t help, ask for another. I definitely ended up with my favorites!

I also learned to listen to my body. If I was tired, I slept. If I was hungry, I ate. The best thing is try to eat healthy, but in my case healthy foods would just make me sick. I always craved McDonald’s cheeseburgers and Taco Bell Tacos, so when I was able to eat, that is what I ate. It was better to eat something instead of nothing, so let your body tell you what it needs. And probably most important: talk to your doctors, feel comfortable with them, you see them a lot. Ask questions and get answers. Have a way to contact them (and the chemo nurses too) -they become a huge part of your life, and mine still are!

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Debbie 09/01/2013 11:28 am
Thank you for sharing your story. You are a very brave woman. The fact that God gave you a baby can only mean wonderful things ahead! My now 11 year old daughter was dx'd with osteosarcoma of her right distal femur when she was only 9. She is now cancer free and we are always praying for her future. We will pray for you too.

Much love,

Debbie Shull
www.caringbridge.org/visit/gabishull
sherry 13/11/2012 03:15 am
Cari, as a newly diagnosed leiomyosarcoma of the retroperitoneum, I salute you! Wow, what a journey.
Susan Schaberg 11/10/2012 12:36 pm
Thank you so very very much for sharing your story.My 23 yr old daughter is concerned about her fertility and everything else that goes with OS.
MiMi Olsson 30/09/2012 10:29 am
Cari, thank you for sharing your journey...you have through a lot but your resilience and outlook are inspiring.
With Hope, MiMi

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