Very Briefly

First, my apologies if I scared anyone yesterday with my ode to yesteryear. I was feeling a pressing need to get all of that off my chest, and it was extraordinarily therapeutic. I send you all a thousand hugs for the encouragement and understanding that you displayed.

To get to my much more briefly expressed point tonight – I am extraordinarily tired. After being away from my couch of recovery most of yesterday, I was told I should take it easy today. That I needed to keep in mind that the nadir of my white blood cell (WBC) count was still to come. So I planned some easy excursions for the day. Dan & I saw Star Trek this morning (wow visual effects, but seriously, 12 ending sequences?), then I went to my weekly Life With Cancer chat (wonderful free resource for patients, friends, and family here in Northern VA), and then promptly came home and have been barely able to get off the couch. This after I was saying this ICE was treating me much better than the ABVD had. Le sigh.

So I am surprised by this fatigue, but tolerating it well. It’s actually kind of a relief to know that the chemo is killing at least some of my fast-growing cells. Victory for fatigue, therefore.

Love and thanks, love and thanks, love and thanks.

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One Year

So today is the one year anniversary of finding a random lump in my right armpit and falling into this rabbit hole. Dan & I went to New York last Memorial Day weekend – we saw the Intrepid, I took him to the Met for the first time, and we got to visit lots of friends. On Monday morning, Memorial Day, I was about to hop in the shower of my friend’s apartment. I stretched in front of the mirror and there it was. About the size of a tangerine under the skin on the right side.

And I of course, was unnerved, but not panicked. Even when an ultrasound showed multiple masses, even when it was declared Hodgkins, and even doing biopsies and chemo, I was never panicked. At least, I never felt the sort of ever present unnerving fear that I do now.

Relapse is not just a one time occurrence for most of us 5-15%ers. Even if you’re lucky and you survive the 5 years that they statistically measure in studies (depressing, huh?), you are only a survivor until proven false. It’s a one way street. And while life is a one way street for everyone, of course, it’s quite a sudden and alarming feeling to be so wholly knowledgeable about just what will most likely kill you.

I’ve been having a hard time, therefore, keeping a primarily positive mentality. Because unlike the first go-round, there is no permanent state-of-health to hope and pray and look forward to returning to. There is no going back to that mentality of May 27th, 2012. Ever. Or the mentality of the end of last November, when my scans were clean and I was so convinced that I had beaten it, could hide my surgical scars, and maybe help out some other young person in the future if they were so unfortunate as to be diagnosed with cancer in his or her early 20s.

I’ve told a few people that this is my mid-life crisis. Not necessarily in a fully morbid, short-life-expectancy way, but in that way where you realize that even though everyone dies, your number is coming up perhaps sooner than you think. This sudden fear for my own self-preservation has occurred to me in passing of course, but since realizing my own mortality while watching Field of Dreams at age 5, I’ve had very few real, true, personal encounters with death. All of my grandparents are still living (thank god), as are my extended family and dearest friends. In total, I’ve lost 2 high school friends, a good friend’s mother, and my 18 year old cat. While on the one hand, this makes me grateful for the lives that are still here, I can’t help but feel a little extra horror when considering that I could very truly be the first person in my immediate family to go. And I don’t know quite how to handle that distinction.

I miss the confidence of that youthful sense of immortality that I once had. That I had up until a few months ago. I miss planning my future the way I did on New Years Eve of 2013, as I looked forward to a long life where I had already done my time as the cancer patient and could imagine years of hair and love and babies.

Which reminds me – once I make it through my transplant (you’ll note I say ‘once’ and not ‘if’ because my supporters have drilled it into me to stay positive in language at least) I probably won’t be having biological children. In preparing for this round of treatment, which will knock out my fertility with almost 100% certainty, I tried to freeze my eggs. It turned out that there weren’t many to freeze (possibly a product of the ABVD), and of those remaining, only 1 responded to the barrage of hormones we tossed at it. So let’s hear it for Neo, the one egg, who represents the path that I always saw lying before me, just ready for the living.

Today wasn’t a bad day. I watched a parade, ate a burger and picnic fare, did a little dance, and got in lots of hugs. So don’t think I’m heating up the bathwater, popping some aspirin, and opening up a fresh box of razors (thanks Frank Underwood) – I’m in a place where sunshine and rainbows are still possible. I’m just having some trouble seeing them for what they are.

Now please melt.

When Will It Melt?

Thank you everyone for such a positive and loving reaction to my first blog post/Facebook announcement 🙂 You all bring me such joy and strength, and I appreciate you all very much.

So here I was on Wednesday, the 22nd, the first day of the first ICE. ICE happens over 3 days (today is Day 3/3), which is not super fun, but so far it’s been rather tolerable! I’ve mostly napped and felt a little nauseous. Not nearly as terrible as I’ve heard ICE can be on others. Which on the one hand, is a relief – no one likes undue pain and nausea. WP_20130522_001

On the other hand, I really want these little tumors to just MELT. After the very first DOSE of ABVD (and I had 8), I couldn’t feel anything anymore. Nada. Not a bit. And that was a very good sign. With the ICE, I don’t know when it should be gone, but theoretically, we want a noticeable decrease in tumor within the next 6 weeks (over 2, 3-week cycles). Otherwise, we might have to turn to alternative treatments. There cannot be the BMT (bone marrow transplant) without being in remission first. And ICE would be a very good way to get to remission. So I want it to MELTTTTTTTTTTTT.

It’s very frustrating having to wait and wait. ABVD was such a walk in the park, and I told myself afterwards ‘well, that was almost too easy’. I know this is necessary, but I would be so much happier, so much saner, to have some definite goal in sight, like “ICE will melt your tumors 100%. There are no guarantees. There are a lot of people who stay in treatment after treatment as palliative care. There are lots of people who do their BMT only to find out it’s back in less than a year, or in 2 years, or 3, or 5. 5 years is usually the point at which they say you’re statistically cured, but then again, who knows?

It’s a very disturbing feeling, walking around and knowing that what could likely kill you might be inside you this very moment. Not like a bus waiting for you around the corner. But a disease that is vicious in its unrelenting grip. And I can do all I can with chemo, positive energy, surrounding myself with love, or distractions, but my fate is not determined only by those things. And I hate that.

It’s especially worse because I relapsed quite early on. If ABVD hadn’t worked at all, I would have been considered refractory. Because I had clean scans, I was only in remission from the end of November until the end of February. Looking back on my symptoms, including a rash I could not shake over January, it probably started to come back almost immediately. Not an encouraging thought. The people who relapse over a year after their initial ABVD tend to have the better prognosis.

But the only way to move forward is to say ‘I’m going to live’ and think about all of the future weddings and graduations and family get-togethers and assure myself that ‘I will be there’. Because I have lived in the dark and hungry pit of despair, and there is no comfort to be had there. There is only pain and fear, and I can pull myself out of that a lot of the time. It takes a concerted amount of effort to find joy instead of fear, but it’s a major hurdle in my life that I must simply step up to.

And for everyone else, I reiterate to you – step up. Find joy. Tornadoes and bombers and mass shootings surround us all, but live for today. Show up for today as your best self. Challenge yourself to be the person you want to be – that superhero that your kids, your friends, your pets think you are.

Round 2

So I was quite negligent once upon a time, and left many people in the lurch when my posts stopped coming. Chemo the last go round was rather dull in comparison to all of the build-up before hand. Sure I cried over my hair, and was worried about surgeries, but even though treatments were not fun, but I could recover in about 5 days from each one and get back to mostly full strength. The cancer had, as it should have, melted away after the very first treatment. Chemo ended on November 2nd, and my scans in September and November were both clear. All well in the land of remission. Bald Thanksgiving followed by Peach Fuzz Christmas and a New Year in Michigan hoping to never do all of that again.

Not so fast, says the 5-15% probability of relapsing.

Hodgkin’s occurs in only 9,000 or so Americans per year. It’s a tiny fraction. And of that tiny fraction, 85-95% are cured with the basic ABVD regimen that I had. I am one of the lucky ones where it came back.

I felt a lump in my right armpit (same place) near the middle of January, but I assumed it was scar tissue from my surgery. When I felt it a month later, I thought – ‘has that gotten bigger?’. It had. I went in for my first-ever 3-month scans at the end of February, and my CT scan came out suspicious. So back in I went, to have a PET scan, which would measure whether the lumps present in the CT were active and stuffing their little faces with radioactive sugar (cancer loves to stuff its face with sugar). And yes, indeed, those little cancerous piggies were gorging on this feast, glowing white hot with malevolence on the image.

The regimen for patients with relapses of Hodgkin’s involves chemo (ICE) to put myself in remission, then a harvesting of my own, healthy bone marrow stem cells, then a high dose chemo that will kill off my bone marrow, then the stem cells will get engrafted again. It’s very very cool stuff, but a little daunting. I will be hospitalized for up to a month for the transplant, and will need to be especially careful, considering how thoroughly dead my immune system will be. There will be many masks and rubber gloves. There will be no sick people. I will take care of it.

Relapsing is a very very scary thing. There is no guarantee of a complete cure for anyone who relapses with Hodgkins. The odds are significantly less stellar (maybe between 40-70%) than with first-round ABVD. When I found out it was back, I was despondent for several weeks. I’ve been having difficulty trying to look at this the way it should be – just another hurdle that I can clear to be on my way towards a more normal, stable, and healthy life. But it’s still frightening to think that my particular body/disease could already be preparing to relapse after all of this that I’m headed towards.

But today is the day. This is not the beginning of some roller coaster where I can’t get off, even if I’m headed into a crash. This is today. Wednesday. The first day of my new ICE chemo. I’m sitting in a private room (ooh la la!) at Virginia Cancer Specialists, right near INOVA Fairfax, having 7 hours of infusion straight. Dan is here, keeping me comfortable and happy. One Flew Over the Cuckoo’s Nest is on, and I am grateful to have very helpful and accommodating nurses and others on my medical team. I am very grateful for having wonderful family and friends to help me, both when I’m feeling positive and when I’m feeling worse.

I’m not entirely clear on what I’ve written, I’ve been getting woozier and woozier. People may have questions, and probably will – I can answer questions! I can answer lots of questions in another blog post perhaps. Or Dan can type while I dictate, who knows.

Sorry it’s not better news, darlings. Hopefully, all of this will go according to plan, and I can be alive and well in 5 years.