Traveling with cancer presents its challenges but on this day, I tried to see the opportunity. It was Day One of CancerRoadTrip, one year ago. My first stop was…
At the age of 22, Lauren Bourdon was diagnosed with Chronic Myeloid Leukemia. Chronic Myeloid Leukemia is a rare type of leukemia that begins by a single DNA mutation of a stem cell in the bone marrow. Although typically treated with targeted chemotherapy pills, Lauren’s marrow remained genetically mutated and unhealthy after a year of trying every drug available on the market. On August 20th, 2014 she was admitted to Massachusetts General Hospital for a stem cell transplant with her sister’s perfectly HLA matched stem cells.
While still recovering, Lauren’s blog Keeping My Light has been an inspiration to many. An advocate for the Leukemia and Lymphoma Society, Lauren says they do everything from helping people pay for their medications, to funding support groups, to helping find cures.
Your life changed in June 2013. Can you tell us about your symptoms, your treatments and your hospital?
I didn’t actually recognize my symptoms, which is so scary. I was diagnosed through a primary care physician from routine blood work. Bless that doctor for saving my life- literally. I went almost 3 years without actual blood work- NOT OKAY! My biggest stress for everyone is please have basic CBC and chemistry done every single year. This will help detect some of the earliest of cancers or other health problems! If I had been diagnosed earlier then my treatment would have likely been a lot easier.
However my CML symptoms were: night sweats, weight loss, excess tiredness, paleness in face-medical term pallor (ghostly looking), shortness of breath when trying to exert myself too much (exercising), pain when laying on stomach (enlarged spleen), bruising, ache in my thighs (a deep bone ache) and overall feeling of being “run down.”
These are difficult symptoms as a lot of these are easily explained away. I also was working in a really intense environment with children with autism in a residential treatment facility, so I explained a lot of the bruising and tiredness away very easily.
I urge anyone with more than 2 of these go to a doctor and get a blood sample- you never know what it could be! May be nothing but ignorance is not bliss.
How has the emotional and physical impact of this diagnosis affected you from the beginning to now?
For the first year before my transplant my cancer mostly affected me physically. I couldn’t do as much as a young 23 year old should have been able to, such as exercise. I also was emotionally drained from failing multiple drug treatments. I had an extra mutation in my cancer so really a double mutation, which is what made the CML impossible to entirely eradicate from my body. But overall I just felt like I had to take it one day at a time and I was so focused on my treatment that it was my sole focus.
During the transplant I was mostly physically exhausted. Your new stem cells are building an entire new immune system while killing off all the unhealthy cells in your bone marrow. I slept A LOT. I also had emotional ups and downs. In the hospital I was actually pretty happy because I interacted with so many amazing nurses who always made me feel like a real person instead of just a patient on Lunder. I was so happy to go home, but being home was very isolating. I could not go out of the house to do anything except for doctor’s appointments for the first 100 days of your transplant. It was really hard. I think those were some of the toughest days of the whole treatment.
As time has gone on (it was three years on August 28th) it has gotten easier. I’m now at a place physically that I feel like I haven’t been since before I was even diagnosed. I work out 4-5 times a week doing Orangetheory and yoga. My body has little quirks still, but overall I feel like any other 27 year old, but possibly with a much greater appreciation and love for my body. Emotionally though it’s been a journey. I’ve battled with depression. It’s difficult to integrate back into your life with your friends and family and work. You’re the same person but you’re so different. There’s like this gap between where you should be mentally, and where you are. With my age sometimes it’s been difficult to relate to my peers, but I have a very amazing group of friends that just have been endlessly supported of me. Even when I’ve gone through my depressed periods and don’t have the mental energy to call anyone back- many are still there. To all of those who have stuck with me, you mean the world to me.
I think for anyone reading this who has someone close to them going through cancer, just try your best to love him or her unconditionally. They may push you away and you may feel like they don’t want you around, but just keep being there. They will come back to you.
Tell us about the Leukemia & Lymphoma Society (LLS) and how they help to change people’s lives.
The Leukemia & Lymphoma Society (LLS) is an amazing non-profit organization that aids every facet of the blood cancer world. They do everything from helping people pay for their medications, to funding support groups, to helping find cures. They are an incredibly supportive organization to all patients and I feel like by raising money for them I am giving back. My sister only had a 25% chance of being my bone marrow match- somehow I got lucky. But so many people die waiting for a match. I don’t think it should be up to luck to decide who lives and who dies. There needs to be better cures out there and easier treatments.
Your blog mentions #cancercosts and the cost of your drugs. Can you give us a sense of your drug and transplant costs?
Currently I still have to take Tasigna, which is one of the TKI drugs that treat CML. Although it didn’t entirely work for me the first time around, it helps keep me in remission. I’m not sure how much longer I have to take it—maybe forever. I am so blessed enough to have Tufts Health Plan. Tasigna costs about $10k a month, and somehow I pay nothing for it. But again, I’m one of the lucky ones. Many have to pay out of pocket a large portion of that. That’s something that LLS can help with if you or someone you know is struggling to pay for their drugs.
Other costs vary, but it seems that the common trend is that everything is pretty expensive. Every time I go to the doctor my bill comes out to be about $4k. And that is just for seeing my doctor and having my blood work done. I pay a co-pay of $50 per visit.
I was in the hospital for my transplant for 24 days. My bill for that stay was almost $400,000. I paid $750 of that. Another cost was my IVF. I went through the process of freezing my eggs before my transplant to preserve my fertility for my future if I ever do want children. That bill was about $12,000 for the process and medications, and I paid $100 for it. I do have to pay for my egg storage now, but that is about $700 a year. A small price to pay to keep my eggs safe.
Many people are amazed by my health insurance. I remember when I was first looking at plans, I debated between two — one with a $7500 deductible and one that did not have one but cost a few dollars more. I am so happy I went with the one that I did. Even with the deductible I would be way over it for most years, but still that’s a lot of money to be handing out every 12 months just to have it start over again.
The downside is that I’m scared to leave my job. If I ever decide to go with a different company, unfortunately one of my first questions will have to be what type of health insurance do you have? Because I’m certainly not shelling out $10k a month for my medicine.
What is the message you want to send to the cancer community and others about fundraising, advocacy and how people can help make a difference?
I always say every penny counts. It sounds cheesy, but it’s true. Some people think that $5 isn’t enough, but if that is all that you can give, it’s more than enough. Not every organization is as transparent about where their money goes, but LLS is. I love them because when you donate you know it’s actually going where it needs to go.
Another big thing— if you are healthy, SIGN UP TO BE A BONE MARROW DONOR. In actuality unless it is a child that needs the bone marrow, you will likely just be donating stem cells. When people say that it scares them, I have a hard time biting my tongue because I think it’s so selfish. The person that you match with is actually depending on you with their life. The least a healthy person can do is sit in a chair for a few hours and donate their stem cells (you actually get all of your blood back!) So please, look into a donor program- they will send you a kit to swab your mouth and voila! Give back to those who need it most.
To learn more about Lauren, Click here to visit her inspirational blog.
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