Sunday, April 19, 2009

Ten years since diagnosis - a cancer story

A little break from my radio silence to mark an important milestone. Today is ten years to the day since I was diagnosed with Hodgkin’s Lymphoma. In this blog, I’ve referred to having had cancer many times, but I’ve never told “the cancer story.” So today seemed a good day to write it – one in which I am celebrating that this illness is a thing in the long-distant past.

The short version of the story is that I was diagnosed with a very treatable cancer. I received standard chemotherapy for my disease. I have not had any problems (minus a few scares) since. Unless you count the infertility. Which no one can link back directly to the chemotherapy but everyone agrees was bad, seemingly very bad, for my ovaries.

The slightly longer version of the story is that I was diagnosed with Hodgkin’s lymphoma at age 27. I had gone in to see my internist for something else, something relatively minor. But while I was there, I asked her to look at a swollen lymph node on my neck, a lymph node that had been there for at least three months. I was embarrassed to show her. I figured I was being one of those “worried well” types. She looked at it and felt it and excused herself. She came back into the room with another doctor whose lab coat said his name and then “Oncology.” I immediately disliked him. They said the lymph node needed to come out ASAP. They also said I needed a chest X-ray. Stat.

Once they started asking questions, it became clear that a number of other symptoms that I’d thought were unrelated and minorly annoying were in fact symptoms of cancer. I’d lost approximately 10 lbs. in the past few months (I thought this was great). I was tired and had stopped exercising (I thought I was lazy). I had terrible itching of my lower extremities (I thought that I needed to switch laundry detergents and was being “sensitive”). I had low-grade fevers (I didn’t think much about this at all).

This appointment happened late on a Friday afternoon, and by Monday afternoon, it had been confirmed (via excisional biopsy) that I had Hodgkin’s lymphoma in my neck and also had a 5 cm mass in the space between my lungs, in my mediastinum. Over the next several, excruciating days I learned that the cancer had not spread below my diaphragm (which was good) and was not in my bone marrow (which was very, very good, although painful to tap into my hip bones to find out).

After getting a second opinion (yes, even a decade ago I was a fan of the second opinion) and weighing different treatment options, I opted for ABVD (a combo of four drugs: adriamycin, bleomycin, vinblastine, and dacarbazine) mainly because it would mean that I might be able to dodge radiation treatment. From the research I had done, chest radiation in under 30s women is best avoided because of increase in breast cancer risk (also not so good for your heart and lung function). My doctor agreed to do the ABVD and take a wait-and-see approach on the radiation. Giving it only if necessary. Fortunately, it didn’t turn out to be needed.

So I underwent six months of ABVD treatments. One treatment every other week. And according to my medical records I sailed through unscathed. Most of the notes say “Tolerating treatment well.” And now that it’s almost 10 years out, I’ll agree. At the time, I found the vomiting, hair loss, fatigue, and nausea very difficult. But it got me my life back.

It remains uncertain if the chemotherapy impacted my fertility. All of the doctors I’ve consulted say that out of the options I had available, ABVD was the least toxic to the reproductive system (MOPP for instance, another regimen, would almost certainly have rendered me sterile). There is little research on subfertility, which is technically the category I fall into (I’m not in menopause/premature ovarian failure and I’ve been pregnant a few times now, but with abnormal embryos).

Despite the lack of research evidence, all of my doctors agree that the medications were not good for my reproductive health. I lost my period for over a year during and after treatment, which they say indicates that my ovaries were damaged (although able to recover). I just have to hope that there are a few good eggs in there somewhere.

At this point, the Hodgkin’s is a long-ago experience. One that has shaped me definitely, and influenced my career path, and that helps me understand patients who are grappling with a number of difficult medical realities. I really wouldn’t change having gone through it. Except for the fertility part.

I try to remember to not be greedy. I have my life, which I would not have without the treatment. And having gone through cancer has given me several gifts, including an incredible appreciation for my health and my strength, which is something I might not have learned for a long time.

But still. These days, four IVFs later, it's hard not to wonder what if. If I hadn't had cancer would I be a mother by now? And since I have had cancer, will I ever be? But I try not to linger there, instead trying to stay grateful for a decade of life now, since my diagnosis.

Mo
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32 comments:

DAVs said...

Wow. What a story you have. I almost said "great" story but that sounds wrong. I'm glad you have gleaned so much from your cancer diagnosis and treatment, but am so sorry that it *may* have hindered your reproductive capabilities. I still believe you have some good eggs in there, too! Just wishing you didn't have to go through IVF after IVF to find them, as I know how impossibly draining this process can be.

Peaches said...

Mo, thank you for sharing your very personal cancer story...I find it incredible how you can put the cancer in perspective with shaping your career/future--once again I am struck with what an amazing woman you are! While you are working through your silence, I will be praying that your good eggs rise to the top and conquer your sub-fertile dx! Pulling for you and Will :)

Phoebe said...

Thank you for sharing your story. You are an inspiration!

I know you will be a mother someday. I don't know if you have any good eggs left, and I understand the grief in possibly letting go of your genetics. Being a step-mom, I know you don't need to be genetically related to your kids to love them. I'm really sorry you have to go through the infertility nightmare, but happy you made it through the cancer. Ten years cancer free is something to celebrate!

chicklet said...

I think you have a really good attitude about this, and how can you not wonder. It's put you in a weird place where you probably should be thankful because what you've been through is huge, but if there was anger over it too, I'd get that. Meaning for me, being angry helps - the whole, 'why the hell me' stuff, the 'haven't I been through enough' stuff.

Not assvice, just saying if that's there too, or if anything else is, it's all understandable with what you've faced.

meinsideout said...

Thank you for sharing - your courage and bravery is inspiring.

Greed is definitely not a word I would use to describe you or your desires. I hope that you are able to move ahead and be a mother soon, so very soon.

((HUGS))

michelle said...

Interesting story - I had a whilm's tumor (kidney cancer) when I was three - had my kidney removed and had radiation and chemotherapy. I know that one of my chemo drugs was vincristine. (I am now going to go see what the others were too).

I have always wondered if it was the chemo or the radiation (or most likely a combo of both) that impacted my fertility. Where I have never been able to get pregnant from it it was more of getting to a place of acceptance for me than any real drive to understand which treatment specifically led to my infertility (or maybe it was a self-preservation thing...)

You have an amazing perspective about your health and fertility - but it does stink (my polite way of saying what I really think) that in order to be healed we had to be damaged.

I will keep my fingers crossed that one of your healthy eggs comes out of hiding soon.

Emily said...

Thank you for sharing your story. You are an inspiration and a model of strength!
I am so very, very glad you are cancer free.
Wishing you all the best...

Andrea said...

Wow. I never got the backstory of your cancer, but I knew you were a survivor. You chemo makes my little radioactive iodine pill look like candy. I am impressed with your bravery and ability to determine the right course of treatment fot you. Most of all, congrats on being cancer-free for so long. Do you get regular PET scans or anything anymore?

I wish I could answer your questions on the infertility front, but I have faith we'll all find our paths to motherhood eventually. I hope that, for you, you find that path very, very soon! ((HUGS))

Mo and Will said...

Andrea,

I had PET and CT and other scans for the first three years or so (over 30, as a matter of fact, which may have been what is doing my ovaries in). No more now. I don't even want dental xrays these days, and when I see my oncologist later this week for my yearly checkup, I'm thinking of asking to switch to breast MRI (rather than yearly mammograms). My body has had enough radiation, me thinks (of course, we'll see what he has to say about it).

Mo

My Endo Journey said...

Thank you for sharing your story. I was a bit curious I must admit. I find it so inspiring that through so much that people go through, they still truck along and forge forward with life so vividly. It's just what we are meant to do...to keep going and to live life to it's fullest. Doesn't mean that you can't have bumps, questions and doubts along the way! Doesn't mean you aren't thankful. Just means you are human!

Good Egg Hunting said...

Wow. Wow. Reading your story reminds me that although infertility absolutely sucks, there is still so much to be grateful for -- particularly our health. Congratulations on ten years since conquering cancer...here's to your conquering infertility and becoming a mother very, very soon.

Alexicographer said...

Thanks for sharing your story, what an experience.

Have you seen that there is now a consortium in the "specialty" of oncofertility funded by NIH -- http://oncofertility.northwestern.edu/? I believe it's organized around research, not treatment, so I don't know that it would have anything directly relevant to your circumstances/hopes/goals, but I do find it oddly heartening to know that science has come far enough in treating cancer that this -- preserving and/or restoring fertility -- is now a focus.

Mo and Will said...

Alexicographer,

Didn't know about the oncofertility consortium. thanks for the link - I will check it out.

Mo

Anonymous said...

Oncofertility is an interesting field. Unforunately, only the big cancer research centers have this kind of specialists. Most cancer patients don't really benefit from the research because they probably can't find a oncofertility specialist locally.

Leigh said...

Thank you so much for sharing your story - I'm honoured to read it.

I think you're a really really strong person :)

dreamsandfalsealarms said...

Thanks so much for sharing your story Mo. I'm so glad you are here, and I'm so sorry that you have this cloud of uncertaintly hanging over your wish to be a mother.

Barefoot said...

Thank you for sharing this.

Brenna said...

I'm humbled by your ability to frame your experience in such a strength-giving way. I too hope that you have some good eggs left and that motherhood becomes a reality for you soon. You're exactly the kind of person who SHOULD be raising a child--you're an inspiration.

Dora said...

10 years is truly something to celebrate! I think the breast MRI instead of mammo sounds like a good idea. When I've had any x-rays in the last year + (dentist, sprained finger), I've been a real pain, asking to double up on the lead aprons.

About the "what ifs," I think that's human nature. I don't think I know anyone who doesn't do it. My fervent hope is that when we are finally on the other side, holding live, healthy babies, we will let go of the what ifs and feel that these are the babies we are meant to have.

Big hug, girl, and big congrats on 10 years! Let me know when you need a break from the diss and some tequila.

Michelle said...

Wow Mo, thank you so much for sharing your story. You are an amazing person and a strong woman. That must have been very difficult. I am very much in awe of you! It is great that you can take something so horrible and learn from it!

Faith said...

What a joyous day -- 10 years! I can't imagine all you've been through, and continue to be amazed and inspired by your strength.

strongblonde said...

Oh, Mo...these are the same things that i struggle with. i know we had different cancers and different tx, but it had an effect on both of our futures... am i *glad* i had cancer? no, but it definitely helped shape who i am today, how i deal with my patients, how i think about my future. it's hard.

i really hope that you are able to get (and stay) pregnant!! xoxo

birdsandsquirrels said...

Thank you so much for sharing your story. Thank goodness you had her look at your lymph node that day!

Cathy said...

You are a very strong person and have an appreciation for life that most of us don't have.

Thank you for sharing your inspirational story!

loribeth said...

Thanks for sharing your story! Both the Toronto Star & Globe & Mail had stories within the last week or so about young cancer patients (in their teens & 20s) -- how very little research is done on this age group, & how different their needs are from older or younger cancer patients, as they are just starting to build relationships, families, careers, etc. Really thought-provoking.

There's a guy in my office right now who is working for us on a year's contract -- he lost his leg to cancer while still in high school He's now 31 & does publicity for the Terry Fox Run (he had the same kind of cancer that Terry had). I salute you both!!

Ms Heathen said...

Thank you for sharing your story with us - your strength is truly inspirational.

Thinking of you both as you celebrate this ten-year milestone, and as you move forward with the final stages of your dissertation.

Peachy said...

Thank you for sharing your story Mo! You are really a wonderful woman.

luna said...

what an incredible journey you've had, mo. I am happy to celebrate this milestone with you (better late than never!) I agree your story is beyond inspirational.

m said...

ah Mo, I am so there with you.

While I was much younger, I can still remember the ABVD vs. MOPP conversation and being old enough that my parents asked ME what I wanted to do.

We chose ABVD plus radiation (no option to dodge it) because the MOPP route sounded so damn toxic and we were given the assurance that if the ABVD didn't work, MOPP would be used as a "back up" (great). Downside: radiation whereas w/ MOPP there would be none.

And later, at cancer camp (not its real name, of course) I would meet at least 2 hodgkins friends who lapsed into leukemia after remission from hodgkins because of MOPP (how's that for a bitch?). And that validated my choice. But now...

It is almost certain that the radiation (full, to my chest and pelvis) is what did the deed. And it didn't help that they pulled my ovaries out of place to "hide" them behind my uterus (which they actually did shield during the treatment).

But, we are here. You are here. I am here. Thank you so much for sharing your story. Sometimes I need to to remind myself that we are in many, many ways lucky girls.

Now if we could get just one more wish granted....

Waiting In Sunshine said...

Mo,
Thank you for sharing this story with us, and for reminding us about life.

Love,
Sunshine

conceptionallychallenged said...

Wow. Thanks for sharing your story. I'm glad the drugs worked, and very much hope they left a few good eggs for you.

Mia said...

Thank you for sharing your story. I am currently 3 years since dx for non-hodgkins (treated with rchop x6 and the dreaded rads) and we are finding, unfortunately, that it has made conceiving quite a challenge. I do appreciate that you have written about your journey, and especially the part about how you are building your family after cancer. thank you.

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