Friday, April 6, 2012

First Battle

Mandy: 1 
Cancer: 0

At least, that’s what I think. I had my surgical biopsy this morning, where a surgeon removed one of my swollen lymph nodes and sent it to hematopathology in order to confirm my diagnosis and determine which subtype of Hodgkin’s I have. (Just in case anyone wants to know or is confused, surgery is NOT part of treatment of lymphoma like it sometimes is with other cancers. Lymphoma is a blood cancer, so the whole system has to be treated, rather than just the tumors.)

Everything went smoothly, and I feel fine with the exception of a lot of soreness in my neck, both in the muscles and the incision. I will have a nice, long scar, a lot longer than I thought. They went for the biggest node (5 cm, which is pretty big in the world of lymph nodes—abnormal is anything over 1 cm).  It was kind of hiding under my sternocleidomastoid muscle (the big muscle that runs down the side of your neck from behind your ear to your collarbone), so the incision is about 3-4 inches long and the whole side of my neck hurts. You don’t realize how much you use that muscle until it’s injured—you use it to eat, to laugh, to hold the phone without your hands, to turn your head from side to side. You use it a LOT. But I have a nice Percocet prescription that I’ll use probably only through tomorrow, and then I’ll switch to ibuprofen. I have absorbable sutures, so I won’t have to “get the stitches out”—they’ll dissolve on their own, which is a plus. 

Other than the pain, the only major downside of the surgery is that not only did the doctor forbid me to swim for a week (which I had expected, given the sutures), he also told me I can’t run or bike or do any other strenuous exercise, including lifting my sweet little Jackson (who is more than double the 10-pound limit I was given). The concern is not that the stitches might pull out from the strain but also the possibility of a bleed or a hematoma if I get my blood pumping too much. The no-exercise rule is really a bummer, since I only have three more weeks of training before the race, and the final week is usually a taper week anyway. So these next two weeks are peak training time, and I’ll have to miss the first one entirely. Hopefully, I’ve developed my muscles and lungs enough over the last 4.5 months that catching back up the following week won’t be too hard. And anyway, if the worst thing that happens is that I have to race a little slower than I might have otherwise (and believe me, I’m not remotely fast to start with), then so be it. I’ll still be racing with cancer, which means I’ll be giving this stupid cancer the big fat bird (and I am about to buy a t-shirt that says just that—thanks to my friend, Meredith, for telling me about, an organization for young adults with cancer). And the no-baby lifting rule REALLY sucks. You also don’t realize how often you lift your kid until you’re not allowed. Even moving him from one side to the other when nursing has the potential to strain my neck, so I have to sit him up on one of my knees and scoot him over to the other side without picking him up. And not being able to swoop him up for a snuggle or a tickle or a kiss hurts my poor heart, especially now, when all I want to do is snuggle, tickle, and kiss him as much as I can. 

But all of that is only for a week, and most of the rest of the news we got today was good. First, Jackson took his first formula like a champ. We were at the hospital for 6 hours, so he got two bottles of formula during that time, and my dad said it was like he didn’t even notice it wasn’t my milk (not sure how I feel about that, but I’m glad he didn’t refuse it!). That was a major relief for me, because I’d been really concerned that he might just go on strike and not drink anything if he couldn’t have breastmilk, so that’s one thing I don’t have to worry about anymore. Also, the anesthesiologist and the post-op nurse both told me that I’d need to pump and dump my milk for at least the first feeding that day because I’d had morphine products during the surgery. The nurse even went out of her way to find a hand-held pump for me since I hadn’t brought mine down. But fortunately, someone had called a lactation consultant, and she stopped by right before I was about to leave the recovery room, and she told me that as long as I was awake, I could nurse (and she added that all moms who’ve had c-sections have had morphine products, too, and they’re still encouraged to breastfeed right away, and since Jackson is WAY older than a newborn, it would not cause him any trouble at all). So as soon as I got home, he and I settled in for a long nursing session, even though he’d just had some formula about 45 minutes before—this made me feel a little better about him apparently LIKING the formula, because he usually nurses for about 7 or 8 minutes these days, and it was clear he had really missed me and missed nursing this morning. I love that boy. Damn, it is going to be so hard to stop nursing him cold turkey in a few weeks. 

But back to the good news. I had a chest x-ray before the procedure to see whether there were any masses in my chest that might compromise my airway during the anesthesia. (This was hard for me emotionally, because all I could think about was the chest x-rays Hudson had done on the day she was diagnosed. She was so very little next to those big machines.) Just before the surgery, the resident told me that the chest x-ray looked clear, which we think is good news. The x-ray doesn’t show as much detail as a CT scan will, but if there were any large masses there in my chest, they would have been visible. There may still be cancerous nodes there, but they aren’t big ones. My hope is that this means two things: one, that the cancer has not spread below my diaphragm (involvement of lymph nodes both above and below the diaphragm means the cancer has progressed to Stage 3), because the progression of Hodgkin’s is usually orderly through each lymph node site (if it started in my neck, it would have to go through my sternum before it crossed the diaphragm); and two, that I might be able to avoid radiation to my chest. The typical treatment for Hodgkin’s is a course of chemotherapy followed by radiation (there are some variations depending on stage) to the involved areas. But radiation to the chest is associated with second cancers much later in life, and since I am only 36, I’d be taking a big risk of possible development of a breast or lung cancer 20 years from now. So hopefully, either the cancer is not in my chest at all, or if it is, it’s in such small spots that it can be treated with just the chemo. I have no idea if any of this is accurate—I’m basing it only on what I have read while researching, but we’ll figure all that out soon enough. For now, it’s reason to hope, and that works for me. 

They also did bloodwork today, and although I didn’t get the details (the surgeon told Ed about it while I was in recovery and I didn’t know about it until we got home, so I couldn’t ask questions), it apparently looks good. I don’t know if they did a differential (where we’d know more about my lymphocytes and other lymphoma indicators), but if it looks good, that likely means that my white blood cell count and platelet counts are normal. Elevated white blood cell count and low platelets are often signs of lymphoma, so again, my hope is that this means that we caught the cancer at an early stage and that I am going to be cured in no time.

And finally, we found out that the hematology oncology department has already scheduled me for a PET scan on Tuesday, which is great news. The PET scan will tell us more about whether the cancer has progressed and if so, where. I had thought we were going to have to wait first for the biopsy results to come back and then for a meeting with a heme-onc doctor before they would do any more tests for staging, but when I spoke to the scheduler, he said that it’s an “evolving diagnosis,” so they were fine doing it before the final pathology report.

All in all, I think it was a win for me and hopefully a good omen for the future. Again, thank you all so much for your support. I really can’t tell you how important it is.


  1. Team Mandy: Way to go! Keep up the good fight!

    Team Cancer: Sit your ass down & shut up. You ain't winnin' THIS one!

  2. Thanks for the update. I'm impressed that you managed to do it given your surgery yesterday. Prayers continue for your recovery and all good things.

  3. Wonderful news, Mandy. Love your attitude. Hugs!! Olivia

  4. The "score" which headlines this post made me smile.

    It's going to be a shut out.


  5. so not to go cold turkey on the feeding, you could start transitioning. Replace a feeding a day with formula until you are only breast feeding to put him to bed at night. This will really help both of you through this.

    I'm on Team CancerCanSuckIt!

  6. YES! I cannot explain why and how, but I have that gut feeling, and it is so strong, that you are going to sail through this with more good news to come.

    Take care and try to relax until Tuesday, you are doing good!


  7. Go Team Mandy! I hope your neck heals very quickly and that you can get back to the training that you are so looking forward to! I am so glad they told you you could indeed nurse after the morphine (I had it during my c-sections and always immediately breastfed).
    Your score looks great- and I am rooting for a landslide win when it all comes together! XO

  8. WwowW. I'm pulling for you, Mandy. And praying for you.

  9. Thanks for such a full update, Mandy! I'm thankful and hopeful with you. Cancer has nothing on you, woman!

  10. You are amazing! Really glad to hear that you are currently in the lead in this battle. I have faith that you'll stay there :)

  11. May good news flow like living waters...take that cancer! Love your way...Renee P.

  12. Mandy, I just heard about your illness from Rich Matheny. Please count me as one of those folks rooting for a prompt and full recovery! And, as I remember it from before, your blog is always inspirational. Please keep it up! I wish you all the best! Larry Kirsch

  13. So nice to hear good news, thank you for sharing. Liz W.

  14. Thinking of you Mandy. Hope you've had a good weekend. Still praying and thinking of you all. x

  15. prayers and best wishes to you in your fight. you are pretty amazing and well prepared for battle. godspeed.

  16. Hi Mandy,

    I haven't commented on the last couple posts because the only things I could think to say seem self-focused: how shocked I was at the diagnosis, how angry I am, etc. I didn't--and still don't--have anything wise or helpful to say, I'm afraid. But I wanted to let you know that I think of you all the time, several times a day, and I am sending you many, many positive thoughts. I am also sending lots of love and support. Many hugs.