Wednesday, April 11, 2012

Prognosis

Mandy: 2
Cancer: 0

Thank you all again so very much for the incredible tidal wave of support over these last two weeks of uncertainty while we awaited more information about my lymphoma. I am extremely glad to tell you that last night, we received about the best news that a cancer patient could get.

My hematologist oncologist (the heme-onc), whom I have not even met yet (which shows what a great doctor he is going to be) called me last night at about 6:00 to deliver the results of my surgical biopsy and PET-CT scan (which only happened yesterday at noon). He said that the diagnosis is indeed Hodgkin’s lymphoma (about the only bad news in the call, really) of the nodular-sclerosing subtype (the most common subtype of HL). We caught it early and my chances of a total cure are greater than 90%. According to the CT alone, the only enlarged lymph nodes or tumors anywhere in my body are these in my neck, which would put me at Stage I. By PET scan, they might call it Stage II, because the PET scan (which basically uses a radioactive glucose to highlight cancerous cells in the body) showed some activity in my chest also. But those nodes are totally normal in size, so if they are actually cancerous, it would indicate only the very beginnings of any spread to that area. So the doctor said my prognosis is in line with Stage I Hodgkin’s with low risk (meaning I have no adverse risk factors that might indicate a poor prognosis despite early staging). So I am Stage IA (the “A” meaning that I have no systemic symptoms such as fever, night sweats, or certain blood count indicators).

Treatment for Hodgkin’s is pretty standard, and, especially with early-stage disease, very straightforward. The normal course for my stage of disease involves 2-4 cycles of chemotherapy (a regimen called ABVD; one “cycle” is four weeks long and includes two doses given at two-week intervals, so basically I’m looking at a chemo treatment every other week for 8-16 weeks), usually followed by radiation to the involved areas (for me, that would mean my neck and possibly my chest). However, radiation, especially to the chest, is associated with significantly higher risk of later cancers (particularly lung and breast cancers) for Hodgkin’s patients who survive longer than 15 years. For people like me who are diagnosed at a relatively young age, this is a pretty significant risk to consider, so I am considering a clinical trial that would replace the supplemental radiation with a promising new treatment that has shown remarkable results with relapsed Hodgkin’s and is now being tried in combination with front-line treatments. More details about that once we’ve done more investigation.

The next steps are to meet in person with my heme-onc on Monday to discuss further plans. I will also have a bone marrow biopsy that day (yikes—although I’m told that they are not nearly as bad as everyone thinks they are) just to rule out any bone marrow involvement, but given that my blood counts are totally normal, this is extremely unlikely. On Tuesday, they will conduct some baseline tests on my heart and lung function, because some of the drugs in the ABVD regimen can damage those organs. We’ll also meet with the fertility preservation specialists at Lineberger that day to discuss the relative risks of the ABVD treatment (the risk of infertility with this regimen appears to be very small, but we want to make sure we understand all of the risks and all of our options).

I’m not sure when we’ll plan to begin chemotherapy. I’m still going to see if it’s possible for me to complete my race on April 29 and start right afterward, but if there’s any concern at all about delaying treatment, of course I’ll start whenever I’m told to start. The doctor told me that starting my new job this fall shouldn’t be a problem at all. Again, totally amazing.  I’ll likely be bald, but who cares?

Another win for me, I think. Big time. And now that I know for sure that this thing is very beatable, I’m ready to beat it. In fact, I’m already beating it.

Jessica and I were talking the other day about what it’s like to go through something like this so soon after a tragic loss (in 2008, her then-three-year-old son was diagnosed with Type I diabetes only ten months after her mother died suddenly from Rocky Mountain spotted fever). We both agreed that at least with a disease like this, there’s something we can do about it, a way to fight, as opposed to the utter lack of control we had over anything that happened to her mom and to Hudson. 

I’ve been pretty surprised at how I’ve managed not to completely fall apart in the wake of this diagnosis. I mean, really, what are the odds of losing a parent AND a child AND being diagnosed with cancer all by age 36? It’s kind of a lot to take, don’t you think? I have certainly had a few dark moments, including the few second right after the pathologist first read the results of the needle biopsy, during which I sobbed and kept shaking my head in total disbelief, and two nights ago, before the PET scan, when I had read some discouraging stories about later-stage and relapsed Hodgkin’s and began to think too hard about the worst-case scenario of leaving my sweet Ed and Jackson far too soon. And I certainly dread spending the rest of my life getting intermittently screened and waiting for each new result, worrying whether the cancer may have come back.

But in general, and especially now that I know that the odds really are in my favor, all I keep thinking is that I have already survived the worst possible thing that could happen to me. The only thing worse that could happen now would be to lose Ed or Jackson, so in some ways, this cancer thing seems almost like a piece of cake. I know that may sound ridiculous, but that’s how I feel. Of course, I know that treatment is going to be unimaginably awful, but really, could it EVER be worse than the many dark months I spent after Hudson died? Never. It could never be that bad. And not only that, with cancer treatment, I can actually look forward to it being over at a defined point in time, whereas with my grief, all I could ever hope for was that at some unknown time in the future, it might start to feel marginally better. No, cancer will be easy compared to that.

And above all, Hudson’s death has instilled in me a ferocious determination to beat the hell out of this cancer. Disease took her life from her decades and decades too soon. I resolved when she died that I had to live well enough and big enough for the both of us. I’ll be damned if I’m going to let another disease rob her, and our family, again.

So to recap, the score is:

Mandy: 2
Cancer: 0

With the help of all of you, the members of what I am now calling my “Screw Cancer Posse,” I am looking forward to a total shutout.

29 comments:

  1. Oh, Mandy. I am so sorry to hear of all you are enduring. A good friend of mine had beat Hodgkins Lymphoma. She is in her early 30s and mother of 2, also. Sending good good thoughts your way.

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  2. My nodding "no" has turned to nodding "yes" I am so so thrilled that you have the best prognosis possible. You are in my thoughts permanently, and I consider you one of my heroes. Go Mandy Go!!

    Love,
    Alex K

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  3. I was so happy to read this news. I can't think of much more to say...just sitting here smiling. Please know that I think of ya'll daily and am continually sending love and light your way.
    xoxo,
    Tracy

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  4. You are a huge inspiration. You'll beat this.

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  5. "Beat the hell" out of it?? Woman, you are going to beat the living SHIT out of it until it is curled up and whimpering in some damp, dark corner and APOLOGIZING for ever daring to be a blip on your radar!!!

    Rock on, Mandy. You are awesome.
    ~Jillian

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  6. Damn skippy!!

    (And PSA: if anyone reading this is not already on the bone marrow donor registry, please consider doing so!)

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  7. Following your journey. Praying and rooting for you from my little corner of the world.

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  8. Love that we're all a part of your Screw Cancer Posse! (Though of course, we wish there was no reason to form this posse, in the first place, but since there is, I think you've got some of the best people out there rooting for you.) I'm also predicting a shutout, and I'll be cheering for you along the way. On Saturday, in fact, I am participating in a cancer research fundraiser, and last year, I participated in a 45 mile bike ride that raised millions of dollars for cancer research at Ohio State. I'd love to do a Team in Training race one day. You are certainly an inspiration to us all. Go Mandy!

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  9. You are amazing. I'm rooting hard for you.

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  10. Even though I am still so shocked and pissed about your diagnosis, I am thrilled about your prognosis. If anyone has reason to feel bitter, it's you; so I am uplifted and filled with hope by your amazing attitude. Tons and tons of support coming your way. love, KAZ

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  11. I have no profanity qualms (sorry for anyone I offend)so I'm going to just say FUCK CANCER. You are going to kick its mutant bottom.

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  12. I'm late to this, I know. I'm terribly disconnected for being online so much. But now that I know, I can say, FUCK CANCER, FUCK THAT, if anybody I know can beat it like a rented drum, its you. Whatever you guys need, we're here and ready to help. You need a babysitter while you beat the fuck out of cancer? We're on it. Need dinner while you beat the fuck out of cancer? I'm a decent cook. Want a bottle of whisky to while away the hours between beating the fuck out of cancer? I know a guy. Please let us know how to help.

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  13. Am so relieved to hear of the good prognosis; I hope that you can start treatment ASAP and get it over with.
    Onward and upward from here!

    Best,
    Jana

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  14. Hudson would be so proud of her Mommy. The rest of us are, too. Much love to you!

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  15. Told you, I predict a shut out. Cancer doesn't stand a chance. Not with your attitude and the rest of the Posse behind you.

    Kris

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  16. I love all of this. Great prognosis, and a fantastic attitude to boot! :)

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  17. You should write a book like nobody's business. Not only is your story quite something, but you are an incredible writer. Thinking of you. - Ashley H. (an old friend of Ed's).

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  18. Meh, cancer, schmancer. You've got this thing kicked, Mandy. Beyond thrilled at this news. Love my friend, Olivia

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  19. Mandy, so relieved to read this and am very teary reading all the comments. You sound so well informed and positive which to me means half the battle. Still praying and sending very positive thoughts your way, and through the months ahead. So happy that you have such great news about your prognosis. What a blessed relief. Take care all of you x

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  20. AMEN! Keep that positive attitude - it makes all the difference.

    Leslie

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  21. I read this first thing in the morning yesterday and it made my entire day. Hard to truly express how grateful I feel, but whew, so relieved. Yay! (Even though I'm still pissed about this situation overall...the good prognosis is the One Good Thing.)

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  22. Amazing! So grateful to read this.

    You've totally got this one in the bag. My sister's cancer was Stage II with a huge tumor spreading across her chest, FYI, and she's doing great in year 10 after Hodgkins. (Oh-- and had another three kids after. And runs marathons, lung function concerns be damned. But super smart of you to check out other options, I think that's a great idea.)

    I sent the video to you, FYI. Let me know if it doesn't work out, for any reason.

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  23. Another posse member here! I think your outlook is going to serve you very, very well in this battle my friend!
    As to the bone marrow biopsy- I wanted to give you my best advice there. My hem-onc gave me the option of in the office or in the hospital with stronger drugs. I opted for the latter- totally recommend it. If you are doing yours with some IV floating meds you will be much more comfortable and it will be over fairly quickly. I had to have her stop at one point (aspiration) and she was really great about it. You will likely have soreness in your back for a bit afterwards so be sure to ask what you can take afterwards.. I think the worst soreness was for about 2 days afterward.
    I hope this helps (vs. freaking you out). I am thinking of you all the time and sending strength your way my friend!

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  24. With you in spirit, every step of the way.
    XO
    Claire

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  25. So sorry to have been away so long. So glad that when I came to visit your site I found some good news for you and your indomitable, ferociously strong spirit. Keep going!
    Love,
    Jackie

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  26. Hi, Mandy! I am Bree's friend that she mentioned above! :o) I haven't updated my blog in ages, but you're welcome to read if you're so inclined. I was diagnosed with Stage IIa Hodgkin's Lymphoma, Nodular Sclerosing in August 2009. I did 6 months of chemo, no radiation, and am happy to say I'm still cancer free! I had my (hopefully last) PET/CT last week actually. I hope these next few months fly right by for you. I think you are completely spot on in your comments that cancer is going to be easy compared to losing Hudson. I thank God everyday that I haven't had that experience, and I would rather do cancer/chemo 10 times over again than go through that. You will do great, and you will beat this, and you will move on from it! The follow ups and anxiety afterward definitely suck, but you've been through so much worse. This will be a walk in the park. I'm so glad you've found it so early. Please let me know if there is anything I can do or any questions you might have for someone that has been there. :o) Best wishes!!

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  27. you have a great face to pull off bald.it'll look great on you .

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  28. Woo hoo! So so glad to hear this and proud to be a member of the SCP.

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