Thursday, May 10, 2012

What’s The Score?

I really lost count. I think the race counted as about 1000 points for me, so who knows where we are now? But I scored a few more this week. 

As you know, I started chemo on Tuesday. The day passed without a lot of fanfare. We arrived to check in at 8AM and were sent directly to the third floor, where the infusion clinic is. (This is after two more people, probably the seventh and eighth persons total at this point, got confused by my “I Give Cancer the Bird” t-shirt. Maybe I should just write in the word “bird”—the little yellow bird does look at bit like a chick, but really, what the heck would “I Give Cancer the Chick” mean anyway?). The check-in desk at the infusion clinic is set against a huge photographic mural of some low-lying swampy area in North Carolina, with cypress trees growing out of the water and framed by blooming dogwoods and azaleas. I’m telling you, the new cancer hospital is gorgeous. If you have to have cancer, it’s a nice place to have to spend a lot of time. I gave my name at the infusion check-in and the woman’s face lit up like it was Christmas. “Oh, it’s your first day, isn’t it?!” Why, yes it is, and I hadn’t anticipated being treated like a celebrity, but OK. She explained what the regular process would be when I checked in, told me that I’m allowed one support person in the back (this was a little disappointing, as I’d imagined bringing several members of my posse at once on at least a few occasions…), that we can eat or drink whatever we want back there, and so on.  (And then two nurses standing behind the desk both looked at my shirt and got it immediately—maybe you just have to be down with the oncology hipsters to get it.)

Courtesy of

A kind nurse named Mary took Ed and me back into the infusion center, which is basically divided into dozens of wide 4-chair unit pods with walls that go only about halfway to the ceiling, so you can see the three people in your pod (arranged in a square) and you can also see over the wall to the person behind you in the next pod over, giving the feeling of a pretty big open space divided up into smaller spaces, kind of like an office with cubicles. Each 4-chair pod is usually attended by one infusion nurse, and each chair in the pod has its own IV pole, vital signs equipment, TV overhead, and collection of magazines. We were told before we went in that we had to turn our phones to airplane mode because something about the frequency of the wireless phones can interfere with the pumps delivering the drugs (although I’m not sure how much they enforce this rule, since the guy catty-corner from me spent half the day saying, “Hello? Hello?” into his phone to a person trying to get the other person to hear him). Mary did a little mini-lesson about my port, explaining how they would access and de-access it for each treatment and telling me that I could get a prescription for EMLA cream (topical lidocaine) to use 45 minutes before each treatment to numb up the skin for the needle stick. She said I could put the cream on at home and then cover it with a little Press-N-Seal to keep it from getting on my clothes. I told her I was already well-versed with Press-N-Seal! After all the needle sticks I’ve had, I don’t know that I really need numbed skin, but you know what, I’ll take it anyway. 

I settled in a little bit and took out all the paraphernalia I’d brought with me. I had framed photos of both babies, which we set on the counter on my left. I had my iPad and laptop, my own cushy pillow from home, and the camera to take a few photos. On the advice of several folks who’d done this before me, I’d worn a tank top under my t-shirt so my port would be easy to access, and then I brought a zip-up sweatshirt to keep my warm without disturbing all the tubing. I’d also brought along a giant bag of Jolly Ranchers, also on the advice of veterans, to suck on during the pushes of the medications and the flushes of saline, which can apparently taste nasty. 

The next nurse to introduce herself got a bit of a surprise. She came up, told me her name was Cheryl and that she’d be my nurse today, and just as she asked me to verify my name and birthdate, I caught a glimpse of the keychain hanging around her neck and immediately burst into tears.

Not only was it a turtle, but I bought the exact same keychain when I was pregnant with Hudson, after we’d decided to call her the Turtle. I bought the same keychain for Ed this past Christmas. We both carry this keychain with us everywhere now. The nurse was understandably taken aback, and I had to put my hand on her arm right away and say, “It’s OK… I’ll explain as soon as I can get my breath.” It was honestly one of the most astonishing things that has happened to me since Hudson died. There have definitely been times when I felt her presence through one thing or another—dandelions, sea birds, certain songs on the radio—but this was one of those times where even the most skeptical of skeptics that lives somewhere in my mind could not help but be mind-boggled. It was my very first day of chemo. There were probably two dozen nurses on infusion duty that morning and she was mine. And not only was she wearing a turtle keychain, she was wearing HUDSON’S turtle keychain. It took me a very long time to get myself together enough to even explain to her what had set me off. For the rest of the day, I kept shaking my head and smiling in utter disbelief.

Once all the shock of that wore off, we had to get down to business. Cheryl had to get my port ready to access for the first time, and in the process, she opened up this super-sterile package of materials. I sort of laughed about it and said, “You know, I’ve been washing this thing with some gauze and kitchen soap at home, right?” And she laughed, too, and said, “Yes, and that is just fine.” I asked her if they’d have to dress it while I was there getting the infusions, and she said yes, but when I explained to her my problems with the Tegaderm, she said she could easily find some other solution, and that after I went home that day, I didn’t even need to dress it anymore, just wash it in the shower and wait for the Steri-strips to fall off. Music to my ears. When she removed the makeshift dressing I’d done that morning and started rinsing the site with Betadine, I thought I was going to scream—my skin was still so raw from the day before (it still looks pretty fried today, too—still healing up from being shredded by the Tegaderm). She tried really hard just to keep the rinse on the Steri-strips themselves. (Really, she bent over backward the entire day to make me comfortable—I really think that any person who purposely associates herself with cancer patients just has to be a different and special kind of person.) She gently peeled off two of the Steri-strips, which burned, too, but that’s because the incision itself is still a little raw, and then cleaned underneath them. She brought over another nurse to spray some numbing spray on there before sticking the needle access in. This didn’t really work, but it did distract me enough that the stick was over before I was able to really howl about it. I am pretty sure Ed can vouch for the fact that I was squinting my eyes and gritting my teeth through most of this process, between the burning skin, the stinging incision, and the needle stick into already sensitive territory. Yowza. But then it was over and she fixed a nice, comfortable dressing over it and told me immediately that it was working just like it should.

She then explained a little bit about what would happen the rest of the day and it became clear that we were not getting out of there in 3-4 hours like we thought (maybe next time). The first thing they have to do each time is draw my blood and send it next door for a stat workup, mostly to see how my white blood cells, red blood cells, and platelets are doing. Assuming that all of these numbers are OK (and this workup can take 30 minutes or more, just depending on how busy the lab is), THEN the nurse can send my pharmacy orders down to the pharmacy so that they can mix up my chemotherapy drugs. The mixing and delivery can take up to an hour more, during which we just get to sit there and do nothing. On this first day, we had a variety of folks come talk to us and tell us about nutrition during chemo, what this particular chemo regimen will do, what the side effects are like and how to manage them, and I even got a special visit from my man, John Strader, the PA who performed the world’s easiest bone marrow biopsy, and also from my oncologist. It was good to see both of them, since it seemed like it had been ages since I’d seen them for the first time, even though that appointment was only three weeks before (a whole lot happened in those three weeks, huh?). During all this time, they also do a lot of flushing and pumping saline through the IV. On top of all the water I was trying to drink, I had to go to the bathroom four or five times during the 6 hours we were there. Cheryl also brought me my pre-meds: several tablets each of Zofran (an anti-nausea medication) and Decadron (a steroid that is also good for nausea). I downed them all with a swig of water and grimaced at their terrible taste. 

Here are some photos of me sitting around, waiting on the dumb old drugs.

My favorite, with my babies

Once the drugs finally got delivered, then Cheryl had to do a test dose of the bleomycin (the “B” drug in the ABVD), because sometimes people have allergic reactions to it. So she had to push a test dose of that first, after which we had to wait an hour before she could push the rest of it. But thankfully, she was able to do the other three drugs in the meantime. Of course, I was sitting there thinking the whole time, “How will I know if I’m having an allergic reaction? Does my chest feel a little warm right now?” I was fine, of course, and she kept on with the rest of the drugs. One of the pharmacists who’d visited with us while we were waiting for the drugs had told me that one way to prevent mouth sores from the chemo is to suck on ice while the drugs are being delivered. But I was thinking, “Wait, though, I have to suck on my candy while the drugs are being delivered! What am I supposed to do?!” Serious problems, I have, you see. I kept telling Cheryl to tell me when I needed to put my watermelon Jolly Rancher in—I wanted to be prepared. And ultimately, I tried to suck on a piece of ice and a Jolly Rancher at the same time. It was a very dissatisfying combination, but if the drugs tasted bad, at least I didn’t notice that part. The first drug is adriamycin, and it is administered as a push through a syringe. It looks like bright red fruit punch, which is a little disconcerting but also kind of cool, and it makes your urine pink for a day afterwards, which is totally bizarre. (Cheryl told me one guy had come in once drinking blue Gatorade hoping for purple urine—she was like, “Umm…”) We had to skip the bleo for now, so then came the vinblastine, which is also pushed in a syringe. And when I say pushed, I mean that the nurse has to sit there for about 15 minutes and push a tiny fraction of the medication at a time. Clearly, they do not have the same addiction to their smartphones that I do. Finally came the dacarbazine, which hangs in a bag and has to drip in over the course of an hour. It was not until I went to the bathroom with the dacarbazine hanging on my IV pole that I saw the stickers all over the bag of medicine that said, “DANGER! HAZARDOUS! HIGH-RISK DRUGS!” Only then did I realize why Cheryl was wearing so much protective gear when pushing all the crap into my port—it wasn’t to protect me—it was to protect her. Nice. And these DANGEROUS! HAZARDOUS! HIGH-RISK DRUGS! are just being pushed right into a giant vein directly into my heart. Lovely. Oh, well, what the hell. If they’re going to kill the cancer and keep the cancer from killing me, HAZARDOUS! be damned. Do your thing, drugs.

Once the dacarbazine was done dripping, the test time for the bleo had long passed, so she was able to give me the full dose of that as well. In between each of the pushes, they also do a flush, where they flush the drug through with some saline. 

Finally the last flush was done. Cheryl was on lunch break, so another nurse, Patty (with whom I exchanged stories of loss—she wears a necklace honoring her late husband), deaccessed me, slapped a bandaid on my port and sent me on my way. Frankly, aside from the turtle keychain incident, the whole day was so anticlimactic. Not that there’s anything wrong with that. 

Then all there was to do was go home and wait and see what happened. I felt fine, with the exception of being tired from being up early and all the sitting around and waiting. Jackson was napping when I got home, so I got on the phone and called some voters (Tuesday was Election Day here in North Carolina and I was calling people asking them to vote against the same-sex marriage amendment on the ballot. We lost. It was awful. But marriage equality is coming and we will all just redouble our efforts.) until he woke up. And once he did, we played some awesome Peek-A-Boo-Hide-And-Seek (you know, the kind where you hide somewhere and the baby tries to chase you and you peek out from the other side and surprise them—yeah, it’s rocking fun, especially with an almost-one-year-old). I felt fine the rest of the day and all day yesterday and all day today. I still feel fine, although my mouth is starting to feel just a touch funny for the first time—I imagine it is the beginning of some mouth sores.

It has been kind of hard waiting around for the side effects to kick in. I’ve said several times that it’s like waiting to go into labor the first time—I have no idea what to expect or when, how hard it will be, how long it will go on. Nothing to go on. I can read about other people’s experiences, but everyone is different. So I just keep trying to remember my Race Rule #2: Think about what I can do in this moment. And all I can do in this moment is enjoy it. The weather was so beautiful today that Jackson, Bess, and I went over to the dog park and playground at Southern Village and soaked up some rays and did some swinging. I reached my fingers up to my neck only to discover that my tumors are already shrinking—they are still there and still noticeable, but they are not protruding as much nor are they as firm as they were before. The doctor had told me to expect noticeable changes within a few days, but I did not believe him. Because it is unbelievable.

So much has been happening that I was shocked to look down at my watch to see today’s date. May 10. It had escaped me that today is May 10. Two years ago today is the day that I took Hudson to the emergency room and she was diagnosed with bacterial meningitis. I started thinking about it and realized that May 8/May 9 two years ago was when she first woke up with a fever. It was the beginning of the end of her life. May 8 of this year was when I first started treatment for my cancer—it was the beginning of the beginning of the rest of my life. The parallels are not lost on me. It is still so unfair that she is gone and I get to stay, that I get to fight and she did not, that she is not here helping “babysit” her little brother while Mommy is fighting the bad cooties. 

But it steels my resolve. I get to fight. And fight I will. For Hudson. And for me. 


  1. Thanks for continuing to share your journey!

    PC & EGC & OPC & ????

  2. Much love, Mandy. Rock on!

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  4. You. Are. A. Rockstar!!!

    Your posts are so real, Mandy, I felt like I was sitting right there in your cubicle with you. The part about the turtle keychain started me crying right away...I am a little lost about where I stand on the whole religous/heaven thing, but a voice in my mind was SCREAMING out, "That girl is WITH you, Mandy! Hudson is there ~ wherever "there" might be ~ and she is watching over her mama." I have never felt that conviction before, but it has GOT TO BE more than mere coincidence.

    And then, your bit about "Serious problems, I have, you see" with the whole Jolly Rancher v/s Ice debacle had me in absolute stitches even as the tears were still rolling down my face.

    You are amazing. An inspiration that has touched the lives of soooo many people...and I am lucky enough to be one of them. To me, that is One Good Thing indeed.

    Still can't believe your nurse had Hudson's keychain...just incredible

  5. I just sat here and said "Oh, my God," when the picture of the turtle scrolled up. Truly amazing. Of all the types of keychains you could have, your nurse has the one that means the world to you.

    I think the score is something like Mandy-1 million, Cancer--the bird.

    I also probably would have done the Iced Jolly Rancher combo thing. Glad it could distract you.

    Hope you continue to feel well.


  6. You and Hudson make me know there is magic in the world.

    Glad she kicked it into high gear for your first day of treatment - gave you a little adrenaline rush to get you through the day - good girl!

    Thank you for sharing. Johanna

  7. Got the shivers when I read about the turtle keychain! I'd call it the working of the Holy Spirit, but whatever one calls it, it's amazing. Hang in there, especially at this emotionally charged time. At two years out from Hudson's death, the grief is still raw. I'm praying for you, and I know that legions of other folks are praying, holding you in the light, sending good thoughts, etc. You indeed have a posse at your back.

  8. Oh wow, the turtle keychain is amazing Mandy, what a blessing on such a tough day. Thinking of you this weekend x

  9. You are one tough chica! What if you freeze jolly ranchers inside of ice cubes? I see a new market! :)

    Incredible about Hudson's keychain, she certainly IS with you.

  10. I also got the shivers when I saw the turtle picture and then read that it really was HUDSON'S turtle. For someone who is not sure where she stands on the afterlife, I have to believe Hudson is there with you. The parallels between your cancer and Hudson's illness are also striking.

    So glad everything is going well in your fight. Cancer isn't going to know what hit it when you're done!

  11. Amazing about the turtle key chain. Thanks for sharing and wow, making GOTV calls right after your first chemo treatment?? Amazing. -LW

  12. That you had the energy, inclination, and selflessness to call voters that day really just sums up what I ( a stranger) have come to so admire about you and the life you are living. Really truly living.
    Fight on.
    You inspire us all.

  13. Keep fighting, Mandy. You inspire me every day.