Chronic + cured = controversial?

If you’ve been following my blog, you likely know my story pretty well.  Here it is in a nutshell, if you’re new here.

At age 42 I was dropped off at the ER by my husband and three young kids (then ages 4, 6 and 7) with an eye infection. No one was more surprised than me when I was admitted because I was highly anemic and had elevated – and rapidly climbing – calcium levels.  Within 48 hours I was unconscious, on a breathing tube, a feeding tube and had had dialysis twice.  Simply put, I was in BAD shape.  These past nearly three years have been a whirlwind.  I had a Stem Cell Transplant in February 2015, lost my hair, got my zero (aka negative M-spike), LOST my zero, left my career and got back – and am now maintaining – my beloved zero, which means I have achieved something called a Stringent Complete Response.

When an oncologist walked into my room that October morning, he told me I had a type of cancer called Multiple Myeloma.  It was scary enough to have an oncologist at 42 years old and to hear him tell me I had cancer, let alone a type of cancer we had never heard of before.

On top of that, one of the first things he said to me was “Multiple Myeloma is incurable but highly treatable”.  He also told me if I had been diagnosed five, even 10 years earlier we would be having a very different conversation in terms of treatment and overall survival.  When you hear something like this, you crave information.  I made the critical error of googling Myeloma and immediately regretted it.  The good news is much of what is online (then and now) tends to be outdated and doesn’t reflect the many recent innovative treatments and advances in Myeloma care.

And there have been a LOT of advances in the management of Multiple Myeloma.  There was a remarkable 15-day period in late 2015, where not one, not two but THREE Myeloma drugs were approved by the FDA.  Additionally, there are many other drugs in the pipeline and hundreds of clinical trials underway.  There is also incredibly promising work being done in the area of immunotherapy, which appears to be a game-changer especially helping patients who were running out of options.

That said, my doctor – an expert in Myeloma – told me himself this disease (currently) has NO cure.  Admittedly, the five-year survival rate for people with Myeloma has steadily increased over the last decade, a reflection of all this progress.  Additionally, these survival rates are statistics and don’t tell everyone’s story – and I hope not my story.  I was young at diagnosis and otherwise healthy and my response to treatment, while not without its challenges, has made me able to live with this cancer every day.

This past April, Lou Brock, a baseball Hall of Famer who played with the St. Louis Cardinals, was also diagnosed with Multiple Myeloma.  Anytime a celebrity is diagnosed with the same disease you have, you hope it will raise awareness and educate others who, like you, had known little about this disease.

In the case of Brock, just a few months later it was announced he is “cancer free”, a statement which should make the average person happy, especially fellow Myeloma warriors. But it has also served to shine a light on an ongoing debate about how to characterize this disease, its treatment, and its prognosis.

Because of that, I have been reflecting a lot about why this is important, why this language seems controversial.  Brock said he was “cancer free” not that he was cured,controversial yet I have seen a pretty strong reaction to this language in the Myeloma community, many who have a fierce and intense response to the use of words like “cured” and “chronic” when talking about Multiple Myeloma.

As someone living with Myeloma, I desperately want to increase understanding about this disease.  Many people chose to be private with their cancer battles, yet I am VERY public.  At 42 years old, I did not – and do not – fit the profile of your “typical” Myeloma patient. As such, I feel I have a responsibility to educate people about this and how I live with it every day.

In medicine, there is an expression “When you hear hoofbeats think horses, not zebras”. It means that doctors are taught to look for the simplest explanations for symptoms rather than the more rare or exotic answer.  Because of this and likely other reasons, Myeloma so commonly gets misdiagnosed.  1-quote-about-when-you-hear-hoofbeats-think-of-horses-not-z-image-coloured-background.pngMany patients present with a common complaint like bone pain, which is often labeled as arthritis, a sports injury or something else.  In my case, I was getting sick – often and for very extended periods of time. I assumed this was because I had young children who were in school and were bringing home germs. Never once had I considered the possibility that I had cancer. I was young and healthy – I assumed getting sick and being a little rundown was part and parcel with being a full-time working wife and mom of three!

But early diagnosis is important with any illness, including Myeloma.  Knowledge is power and each time someone is diagnosed, particularly someone with any type of high-profile status, there is an opportunity to raise awareness and potentially funds to find a true cure.  As someone who herself needs that cure, of course I want this. There are some who believe saying someone is cured belittles the suffering that many patients are dealing with every day, or dishonors the memory of those who are no longer here to fight anymore.

And I understand all of this. I want that cure. I NEED that cure. I wish I had the type of cancer you can cut out, radiate or even proactively prevent. I wish I didn’t have this shrewd and sneaky cancer, that is always working to outsmart the treatment being thrown at it.  The type of cancer always lurking beneath the surface.  But I do not.  What I have is this cancer, this “incurable but treatable” cancer.  And for my own sanity I choose to focus on the “treatable” part, NOT the incurable part.

THIS gives me hope.  It allows me to think I will be there for my kids’ high school graduations. This mindset helps me trust my husband and I will celebrate our 20th wedding anniversary, even our 30th or 40th.  This keeps me calm when there is a blip in my test results from one month to the next.  Because I work hard (some days more successfully than others…) to maintain the mind frame of a person living with a chronic illness, I don’t freak out.  Please understand I am not minimizing how INCREDIBLY difficult it is to live with any bump in the road2chronic illness but doing this provides me with a sense of perspective I might not have if I was always thinking of myself having ….duh, duh, duh….an incurable cancer (!). This outlook helps me see these challenges as bumps in the road, but doesn’t mean the road is coming to an end.

I respect and ache for those for whom this disease is robbing them or their loved ones of their strength, hope and health. It has tried to do it to me.  Without question it has changed all of our lives. And I don’t want anyone to feel the their struggles are being overlooked.

But each person and their families experience this in different ways, both good AND bad. But it is also important to realize some of us NEED to hold on to the idea this disease can be managed. Who NEED to have faith that science is on our side.  I also realize that sure, it’s easier to be positive when you’re in remission.  But I also say being positive is part of what is keeping me in remission (along with good old luck, a kick-ass medical team and wonderful village of family and friends supporting us).  It’s also true there are sadly many positive people who don’t have or didn’t have the same luxury of thinking this way.

The reality is cancer SUCKS.  Whether you’re the one fighting it or caring for a loved one who has it.  Whether your cancer is the kind you can cut out, radiate or even proactively prevent. Or if you have the kind that is incurable but (supposedly) treatable.  Cancer is also an individual sport as my dear friend, also living with cancer, often reminds me. Survival rates are just averages and don’t always reflect what any one of us individually is going through.  What works for me is a strong belief that I will live with this “chronic” disease, until that “cure” finally comes along.

Until then, #gameon

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22 thoughts on “Chronic + cured = controversial?

  1. Love your attitude. Yes it is a shrewd and sneaky cancer, but we are blessed to be in the age of so many different medical/clinical options that are available to us. I do see a cure shortly, in the meantime I’m in this fight, lIke you with a expert MM specialist and his team and my kick-ass never give up, never stop inquiring about the latest treatments, and a positive attitude about this mess I’ve seem to have gotten myself into. Lol

    Liked by 2 people

    • Bonita – thanks for your comment and for reading! There’s enough doom & gloom out there – I vote for staying positive. And I see that cute coming also! #gameon

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  2. Thank You for sharing your journey..I have fought my MM for 5 years now. No SCT because of High-Risk Infections. I like you pray for that cure, but until then I keep moving forward. I try to control my severe bone pain with Hydromorphone. Excercises do not always agree with me.
    Those fractures creep up on me, so I am so careful, I had too many of them. I am 65 years old & I want to enjoy my grandkids for a long time.
    Prayers for all of the MM Warriors.🙏🙏
    Hope you continue doing well.
    Louise

    Liked by 2 people

    • I am 70 years old and have had MM for 5 years. I did have a stem cell transplant the first year. After the SCT, I felt wiped out for almost a year. I don’t know if the SCT helped at all, except it kept me hibernating for a long time so I didn’t get any infections. This has been exceptionally hard for me because I am a widow and have no children. I pay someone to help me a couple of days each week, which helps me get by. This person also takes me to doctor about 45 miles away. I am on dex, dara & kyprolis now. I do well, I just tire out very fast.

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      • Judith – thanks for sharing your story! MM is certainly tough on us but I have a will to live that forces me to stay positive, optimistic and hopeful! I hope that your treatment keeps you strong and well for a long time to come!

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    • Louise – appreciate the comments. I have been lucky to not have bone involvement (at least not yet). I know how much more difficult that makes the MM for many. Prayers to you as well – and all of our fellow warriors!

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  3. Thank you for your honesty and optimism. I was diagnosed at age 33 in 2009; and I recently celebrated my 41st birthday. My boys are 11 & 15, and like you, they are my hope! I had a SCT in 2010 and have never reached a zero M spike; but I refuse to live like a “cancer” patient – despite weekly infusions. Ive decided that I’m going to live a long life, experience milestones along the way, and hopefully inspire. The glass is either half-full or half-empty, and I’m determined to stay hopeful and focus on what’s good. Continued health to you and all myeloma warriors! #WeGotThis

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    • Wow – you were 33? We definitely didn’t fit the profile of the “typical” patient! I used to get weekly infusions but worked with my doctor to change my plan because it psychologically made me feel sick still. Now I get Velcade 2 weeks on, 4 weeks off and take Rev and Dex at home. We were nervous at first but it’s working and I’m still maintaining my “zero”! Keep at it – I trust we will be around for our kids for a long time!
      #gameon 💪🏼🙂❤️

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  4. This is the first time I have read your blog, and I found it totally uplifting and one I will follow with enthusiasm. Your attitude and the delivery of your message are an inspiration to those of us who also have hope for that “cure” in our lifetime.
    I am 64 and my diagnosis of multiple myeloma came three and a half years ago as the result of a routine dental X-ray that revealed a lesion on my jaw. I, too, have a wonderful medical team who have been managing my cancer, and my treatments have included a SCT and the usual chemotherapy drugs of velcade, revlimid, and decadron. At this point, with exception of a broken collarbone, I have been symptom free. My mm numbers are dropping, but not where we want them., YET! My doctors believe that, in my lifetime, I will benefit from these experimental drugs and immunotherapy that you mentioned, but when they are more mainstream treatments.
    Bottom line… I am not going to let multiple myeloma get the best of me… and your message just bolstered that goal.! As a former athlete, I love your comparison to this fight being an individual sport… and it sounds like you have quite a coaching staff to help you!! That has been my perspective as well!
    Rock on… and keep inspiring!

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    • Suzanne – thanks for the comments and for reading! It’s always tough to put your thoughts into the world BUT I always say it’s my therapy! I always feel so much better after I write! I do have a great “coaching” staff…I’m quite lucky! Keep those numbers dropping – they WILL get where you want them! #gameon 💪🏼

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  5. I really appreciate and relate to your attitude. I was diagnosed at 54, 5 yrs ago, I was an otherwise very healthy person. I never took this as a death sentence and prefer to live with this as a chronic disease. I never had an SCT due to the specialist I go to. He used to do them and was head of oncology of a big hospital in Los Angeles, when he saw the results of the ones who had SCT to those just placed on maintenance it did not make much difference and the effects on the body were significantly different with the SCT. So I have not had one. I have some good friends made in the local MM community that have had SCT and some that have not all are doing well I’m happy to say. It is a very personal choice. I reached zero m-spike for a short time but then it crept up to a low level which I have been maintening. I like you want to maintain until a cure comes, I am not saying if, because I do believe a cure will come. I keep a very positive outlook and do agree this helps. I have been married 39 yrs have 2 grown children and a grandson 2. Many reasons to live a full and happy life. Onward through the fog 🙂

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    • Sherrie – thanks for sharing your story. Deciding to get the SCT is a big decision.l and I struggled with it also. That said I was only 42 with little kids and my doctor wanted to treat as aggressively as possible. Aside from hair loss (🙁) and a bout of C diff, I tolerated it pretty well! Would I do again? I’m not sure but I’m hoping it’s what’s put me in sCR! Keep those numbers low and attitude positive! #gameon 💪🏼

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  6. I am just beginning my journey with multiple myeloma as of yesterday Thank you for this blog. I’m so glad my daughter found it. It has already given me comfort. I’m scared but at 49 plan to give it a run for its money. I’m to be a grandmother in little over a month. I have too much to live for.

    Liked by 2 people

    • Kristie – I’m sorry to hear about your diagnosis! Please feel free to read older blogs too…they may resonate for you! If you ever want to take, find me on FB or I can give you my email. Our friends and family are all wonderful but I also believe it’s helpful to talk to someone who really knows we are going through!

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  7. Yes you do have the right attitude because the other choice is the end. I had major back surgery from mm and will begin my radiation then chemo and finally stem cell therapy. I plan to live and fight with all my family and friends helping to support me because I can’t do this alone. I have to much living to do and giving back to my community as a volunteer. I hope all of you will be strong no matter what the outcome is. Let’s all kick some mm ass right now.

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  8. I love reading your blog, and this one was particularly great and so positive. I was diagnosed at 39 – and same as you, otherwise very healthy. My kids were 4 and 6 at the time, so cancer was (and still is!) a horrifying shock. Fast forward two years, treatment, and SCT in March 2016, I am now 41, kids are 6 and 8. I have achieved complete response as well (not complete stringent, but still pretty damn good!). I feel better than I have felt in years, and I can do all the things I used to and then some. I am so encouraged by the advancements in research, and I am delighted that you bringing this disease to light and this community together!

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    • Jennie – thanks for your note back and kind words! Being diagnosed with something like this SO young is crazy and scary and overwhelming and ….🙂. BUT we are both doing great which is a gift. I realize many others have it much worse in terms of their every day quality of life and response to treatment. But so many are rally negative about when others use these trigger words like “chronic” or cancer free” or “cured” God bless the people for whom this is true!! Hope you’ll keep reading!
      #gameon 💪🏼

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  9. Thank you so much for eloquently sharing your perspective and your optimism. It is so helpful to me to read about other young parents thriving despite this diagnosis. My husband was diagnosed last fall at age 30, just as we were thinking about starting our family. He is managing treatment well and like you was thrilled to get that 0 M spike. Even so, it’s still so scary to be starting out on what we had hoped were decades and decades together with this diagnosis, wondering how many anniversaries we get, wondering if we should still have kids with “incurable” hanging over our heads. You are so right that I NEED that word “chronic.” Thanks for sharing this – it made me feel less alone.

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    • Lili – yikes, 30?! I can’t imagine what that must have been like for you guys! The worrying does eventually get easier. I used to lay with my kids every single night, worrying how many more nights I would have with them. But that has stopped. I’m not saying I don’t still have moments when I think about my time with them but NOT like when I was first diagnosed! That’s why the words – and the perspective that come with it – is so critically important to me. I hope you will keep reading and keep me posted on how you and your husband are doing!
      #gameon

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  10. I love your insight and upbeat perspective! I look forward to following your blog. My husband is 5 1/2 years out from diagnoses. He was not expected to live at the time of diagnoses in January 2012 (like you he went quickly into a coma and ICU). Our children, and his siblings from England, all came to say their goodbyes. But he made it! He was given a prognoses of 3-5 years. He had a SCT in January 2013. Since that time we have lived life to the fullest. While he has never reached any kind of “remission”, he has been able to tolerate several treatments quite well. We have a small RV and decided after his SCT to sell our house, downsize to an apartment we own, and travel! We have 4 children living all across the country. We are currently spending the summer in Vermont, we spent the winter in Florida and we take off in a few weeks for our 4th cross country trip. He just started Daratumumab this summer, per his specialist here at Dartmouth, and it is working beautifully! Never give up hope. There are new treatments everyday and we just need to KEEP LIVING AND KEEP UP THE FIGHT!

    Liked by 2 people

    • Ginger – I’m sorry to hear about your husband. How incredibly difficult that must have been, saying goodbyes! Wow. But sounds like he – and you – have really found a way to embrace life since then. I’ve heard great things about Dara and I hope it will continue to work beautifully for tour husband. Hope you’ll keep reading!
      #gameon 💪🏼

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