Monday, May 7, 2012

Ready (or Not), Set, Go

Finally, three months after I first felt a swollen lymph node on the right side of my neck, almost six weeks after I was diagnosed with Hodgkin’s lymphoma, after selling one house and buying another, moving to North Carolina, and completing an Olympic distance triathlon, it is finally time to face the music. At 8 AM tomorrow, I start chemotherapy.

For all the time leading up to last weekend’s race, I could almost pretend that I did not have cancer. As long as I had the race to look forward to, the cancer was just another thing to deal with at some point in the future. As soon as the race was over, reality set in and I had to face returning home to be a cancer patient. 

It was not easy. Maybe it was all the hormones I was shooting into myself for the embryo freezing process, or the poorly timed and poorly worded message I received from someone right after we landed back in Raleigh, or the bad stick I got at the hospital an hour later getting my blood drawn. Maybe it was all of those things and more, but I cried at the drop of a hat just about that whole day. After my appointment at the hospital, Ed, Dad, Jackson, and I had lunch in the hospital cafeteria. I just lost it right there in the middle of the dining room and Ed leaned over and put his arm around me and said, “I’m sorry you had to come home and be a cancer patient.” 

The next morning, I reported back to the hospital to get my port placed. The procedure itself was pretty easy—they used conscious sedation for it, so I was “awake” but totally loopy and mostly unaware of what was happening. I felt some pressure now and then, but I really don’t remember much else except thinking, “Am I supposed to be awake?” The recovery from that procedure was much worse than after the biopsy, though (when I had full-on general anesthesia). I felt so groggy from the drugs and as soon as we got home, I laid down on the couch and fell asleep for a couple of hours (as compared after the biopsy, when I felt great). And when I woke up, I was in a fair amount of pain. They make two incisions for the port placement, one in the chest, where the port itself is placed, and one a few inches higher, just under the collarbone, where they thread the catheter into a giant vein into the heart. Both were very sore every time I moved (and if I thought I used my neck muscles a lot, it was nothing compared to how often I use my chest muscles—basically any time I move my arm). And unlike the biopsy, this time, I hadn’t received any meds—my discharge instructions said to call if I couldn’t control the pain with my “regular home meds.” Really? OUCH! So I stuck it out with over-the-counter stuff until bedtime, when I just took some Percocet leftover from the biopsy. 

Even worse was the realization that I was again on lifting restrictions for at least a week. So no lifting, scooping, grabbing up my little guy for the entire final week before I started chemo. I was so pissed off when I realized this. There was no reason to get the port placed this week—we made the appointment because I was originally planning to start chemo that same day. But then we decided to do the egg harvesting, which required us to put chemo off for one more week, but I just left the port appointment as is, not thinking about the fact that I wouldn’t be able to lift him or swim in the pool with him during the last week I got with him before becoming a cancer patient. I could have waited and had it placed right before starting chemo. Argh. I will say, though, that it was uncomfortable enough at night that I was ultimately glad that the pain would already be behind me by the time I started chemo.

And then came the dressing changes. Because the port mechanism goes directly into the heart, it is critical to keep it extremely clean until it heals over completely (in about 2 weeks). I left the hospital with sterile gauze and Tegaderm over the two small wounds (which are closed with stitches and Steri-strips), with instructions not to touch it for the first two days, and then to replace the gauze and Tegaderm every day thereafter. If you’ve never seen Tegaderm, it’s kind of like a sterile version of the stickiest Saran Wrap in the world. It adheres to the skin and basically seals everything out. The problem is that it sticks so well, it peels a layer of skin off when you remove it. Imagine trying to take off the stickiest Band-Aid in the world, and you will see what I mean. And there’s no ripping it off, either, especially when it covers 12 square inches of skin. I did OK for the first several days, but when I went to change it this morning, my skin all around the incision sites was just as raw as if I had second degree burns. It stung so bad that it brought me to tears and I knew I could not put the stuff back on again today. I called the nurse and asked what I should do—she said that plain old paper tape would be OK as long as I kept the wounds covered and dry. I couldn’t find the paper tape, so I did some Googling and learned that some folks had success with Press-N-Seal plastic wrap, and what do you think I walked out of the house with this morning? Gauze covered by Press-N-Seal. I MacGyvered that hell out of that dressing, thank you very much. Screw cancer. Anyway, the nurses will have to look at it tomorrow when they access my port, so hopefully they can give me a better solution for the next several days until the skin is completely healed over. Here’s a photo of the two incisions on the third day after the surgery—it still looks the same now, but I have no idea what it looks like under the Steri-strips. And you can see already where the Tegaderm was starting to leave its marks. Once everything is healed over, it will look like I have a triangular-shaped lump under my skin. Weird triangles under the skin, turning radioactive for hours at a time—having cancer is a bit like being an alien.

I spent the rest of last week trying to unpack as much as I could of the stuff we can use while staying at Dad’s house until our renovations are done (not until the end of the year, at the earliest, I think). Mostly clothes, toiletries, kitchen goodies, and the like. And every other day, I went in for monitoring at the hospital as they tracked the growth of my ovaries. Each trip to the hospital meant an ultrasound (of the now-infamous transvaginal kind—although I definitely believe no woman should have to endure that before having an abortion, it was also the least bothersome of pretty much anything that has happened to me so far as a cancer patient) and another blood draw. All the needle sticks made me gladder than ever that I’d decided to get the port, even though I’ve hated dealing with the port site all week. Finally, on Friday, the fertility docs said I was ready for my trigger shot (remember that I’d been giving myself three different shots every night for the past two weeks—my heart really goes out to women who have to do this multiple IVF cycles in a row—it absolutely stinks), which I gave myself on Friday night. This shot triggers the ovaries to release the eggs that have been growing so that the docs can go in and retrieve them. That procedure took place Sunday morning, exactly 35 hours after the trigger shot (seriously, the science behind IVF is absolutely astonishing). Another conscious sedation deal, and the weird part about this one was that I DON’T really remember being awake much, but I DO remember several points where I cried out in pain. (I won’t gross you out with the details of this procedure—you can look it up if you want.) Thankfully, I haven’t had much pain after the procedure—I just felt crampy and bloated. But once again, I came home, crawled into bed, and slept for three hours while the sedation meds wore off. Boy, even though general anesthesia is more dangerous and requires a breathing tube, I’d really almost prefer it to the conscious sedation. But in the end, hopefully all of that craziness will be worth it. We had a fair number of eggs fertilize (8 out of 14, not all of which were mature), although we have to wait a few more days to see how many of the embryos make it to the freezing stage. Science is truly amazing, y’all.  

Also on the agenda was my pre-chemo hairdo. In the vast majority of cases, folks taking ABVD chemo lose their hair. There are exceptions, of course, but I’d rather have low expectations, prepare for the worst, and be pleasantly surprised than go into it thinking I’ll be one of the lucky few who get to keep their hair. So I decided I would go ahead and cut most of it off ahead of time. I did it for a few reasons, I think. One, I’ve read too many disconcerting stories about people who run their fingers through their hair one day and it just starts pulling out in clumps. No thanks, especially with a busy baby boy who is constantly pulling at my hair. I’d really rather not look down and see a big fistful of my hair in his mouth. Also, I figured I’d try a short do again (I had one about 10 years ago) to see if I liked it, knowing that it will be gone in few weeks anyway. And finally, I think mentally it seems a little easier to go piecemeal—chop it all off first and get used to that before going completely bald. I’m really not all that attached to my hair (I spend about 5 seconds on it every day with a quick comb-through and maybe, just maybe a little bit of product, but I almost always leave the house with it wet), and it will grow back, so the idea of being bald doesn’t bother me all that much. But I still figure it will be slightly less shocking to go from super-short to bald than from long to bald. Here are the before and after photos:

Still haven’t figured out the wig and scarf thing yet. The cancer hospital has a class called “Look Good, Feel Better” once a month—the May class is the day before my second treatment, so right around the time my hair will start to fall out. They have loaner wigs and teach tricks with makeup (doubt I’ll be doing much of that, but you never know), so maybe I’ll learn some good stuff just in time. 

As far as the baldness goes, it looks like once I lose the hair, it will be a while before I get it back. I mentioned in an earlier post that I was still deciding on what course of treatment to pursue: chemo+radiation or chemo+clinical trial. Ultimately, I decided I wasn’t comfortable with the risks of either. Any radiation would involve at least a small amount of breast and lung tissue, even if it were mostly concentrated on the nodes in my neck region, greatly increasing my chances of breast or lung cancer 10 or 20 years from now.  And the risk, even as tiny as it is, of suffering a rapidly degenerative and usually fatal neurological disease as a result of the clinical trial regimen was still too much of a risk for me. Perhaps if I were ten years younger and had no kids, the lure of only two months of chemo and a very low-risk clinical trial to avoid radiation would be worth it. But quite frankly, no risk of leaving Jackson and Ed within the next six months is worth it to me. Particularly when there is a tried-and-true cure for Hodgkin’s. So I talked to the doctor about doing chemo only, and he said it’s definitely a viable option. He sent me a study that was just released that found the overall 12-year survival rates (the max length of the study’s follow-up period) for people with my very low risk profile to be 98% for both those who did ABVD only and who did ABVD+radiation. I was sold. The only downside is that it means I’ll have to do at least 4 rounds of chemo (before, we thought it would be only 2) and possibly 6. But again, I’ll take 6 months of feeling not-so-hot if it means I’ll be cured and will live a very long time. In some ways, it was a very hard decision, but in some ways, it was a no brainer.

So tomorrow, it begins. I have some idea of what to expect from the day itself and for the next two weeks until the next treatment, but it can really vary from person to person. At a minimum, I imagine I will feel a bit like I have the flu for the next 4-6 months, with a wide variation between good days and bad days. From everything I’ve heard, I’ll have a lot more good days than bad days, so I’m optimistic that I can still have a really fun summer with Jackson. 

After the race, I wrote about how determined I was to finish the run without walking, in part because I was trying to prove to myself that I had the internal fortitude to handle what is in store for me the next several months. The more I thought about the race, the more it became a metaphor to me for making it through my cancer treatment. I remember the night before the race, one of my coaches mentioned that although the swim course looked scary, the buoys were about 100 meters apart, and that we should just think about the swim in 100-meter increments. All we had to do was make it to the next buoy. And that’s exactly what I did—I just swam from buoy to buoy, concentrating only on making it to the next one, and not thinking about having to make it all the way through the swim course at once. Coach Ted said that in every triathlon, something is going to go wrong, and instead of panic about it, all you can do is think about what you can do in that moment. That advice came in really handy on the bike when I realized I hadn’t really prepared my nutrition strategy to account for coming out of the long swim. I had to rethink the strategy midstream, and ended up taking one gel right at the beginning, and then splitting the second one into two halves during the second two-thirds of the bike course. And then there was the run, which I knew before the race even began would be nothing but a test of my will. And it taught me that I have more guts and more mental strength than I realized, even after everything else that I have been through.   

And through the whole race, of course, there was Hudson—in my One Good Thing bracelet, written on my arm in black ink, smiling that giant grin in images that flashed through my head, in the dozens of seabirds that made their way through my race path, in the little girl at the end of the race, grinning and wearing Hudson’s bumblebee dress. She was with me all along, and she’ll be with me through this, too.  

So a little recap: 

1.  Take one buoy at a time. 
2.  Think about what you can do in this moment
3.  You are way stronger than you think you are.
4.  Hudson is always with you. 

To remind me of all of this, I’m taking my St. Anthony’s Triathlon water bottle with me to chemo tomorrow.

I continue to be grateful beyond words for all the love, care, and support that keep flowing our way. The universe may have given us a ridiculous amount to carry, but it sure gave us a lot of shoulders to help us carry it. 

Bring it on, chemo. And get out of the way, cancer—I’m about to run right by you. 


  1. Thinking of you as you take this next step. My brother went with the 4 rounds of chemo and nothing else; I'm hoping like him, those effing Hodgkin's cells inside of you will be no match for the chemo and remission will come swiftly.

  2. I wish so bad that it was not so, but since it is, I hope for peace and strength for all of you. I know you can do this. You've been through so much worse. I do have one more thing to say to the cosmos, however: WTF???


  3. With you through it all. Loving you Big...Renee P.

  4. I love being part of your posse!!! Thinking of you today and everyday.


  5. Since I'm the praying type, and this day is already one where my prayer wheel is kicked into overdrive, I am going to hold you, Jackson, Ed and Hudson in my heart all day. I love your check list-- screw cancer!!!!

  6. Thinking of you each and every day.
    And, I think you carry us as much (or more) than we carry you.
    Rachel C.

  7. Your checklist sounds very manageable. We all know you can do it. We've known #3 about you for a long time now.


  8. Hair or not, you have a beautiful smile!

    I will be thinking of you today, you are truly incredible. Take care and get healthy fast!

    Best, Jana

  9. Will be blowing bubbles and sending positive thoughts to you all and prayers this week and always. Thinking of you a lot Mandy, have no doubt you will run far from cancer, Hudson and your family with you all the way! Take good care of you x

  10. Thinking about you, cheering you on this morning Mandy. Every day that passes gets you one day closer to being cancer-free.

  11. Hoping you have very few side effects from the chemo and get to enjoy your boys. Good luck with everything.

  12. Mandy, you are strong. I hope you have a successful treatment and that your strength doesn't get tested any more.

  13. Hope it all goes as well as possible, Mandy. I am truly in awe of your attitude and approach to it all. -LW

  14. Thinking of you today, Mandy, and cheeering you on! Such an inspirational post.
    - Ashley D.

  15. I love your last line. You are so strong and so brave and you are kicking cancer's ass so hard.

    Thinking about you. I wish I lived close to you so I could bring you crappy movies and seltzer when you need it.

  16. Thinking of you. Also, a tip about the Tegaderm--If you lift up a tiny corner and then hold one side while pulling on the other side, keeping it horizontal to your skin, the adhesive releases and it comes right off without taking any of your skin with it. So sorry no one showed you that!!

  17. You are awesome! Now go kick cancer's ass!!

  18. Mandy,Ed,and Jackson:

    Collective, positive thoughts create massive change in this world and so I know they def will help you to good health once again. Your army is relentless.
    kim b

  19. Mandy,

    You are incredible. One buoy at a time.

    I hadn't been to your blog in some time, what with the move and all, and I actually came back to it just last week, after we lost my cousin tragically and suddenly. He and I were always close and I have a close relationship with his parents. I was writing to his sister and typed the words: one good thing - without realizing it. Which led me back here. To find out One Bad Thing. Which of course you are tackling head-first. All the power to you.

    I still can't find the one good thing in his death. I just talked to his Dad, my golden-hearted uncle who is devastated, and I just can't find the single goddamn one good thing in his death.

    Which is why I came to your blog. To help try to find a way. And I've directed a few of my family members here. So you, Mandy, are One Good Thing today.

    Stay strong. Nice eggs.

    Love, Johanna