Light the Night Walk, Boston 2011

On Thursday night, my mom and I walked with a few thousand other blood cancer survivors and supporters in the Leukemia and Lymphoma Society’s Light the Night Walk. Even the constant drizzle didn’t dampen the spirits of Boston’s largest Light the Night Walk ever.

My mom and I at the Light the Night Walk

Are we related? Nah...

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Posted in Personal Stuff

Facing fear

Anyone who knows me knows that I have a holy mother of G-d fear of flying. In the past, it has dictated how I travel (including spending 36 hours on a train or 24 hours on a bus) and where I traveled. It is with this in mind that it may come to a shock to most of you that this afternoon I plan on climbing in the back of a prop plane on my good friend Will’s second flying lesson.

I haven’t had much of a choice with the fears I deal with – and let’s face it; the past year has been pretty scary.

Even before I was diagnosed, transitioning from college student to adult is scary. Unemployment and job hunting, my first big relationship failure, moving cross country, first job, and trying to make sense of a social life once most of your friends move away combined makes for a ridiculously tough transition. Once things finally felt back on track, I got sick.

One of the things I pride myself on is the way I handle fear. For the most part, I am able to power through. When presented with the opportunity to CHOOSE to face a fear, I feel that I can’t turn it down and still feel OK with myself.

 

Posted in Personal Stuff

False Alarm…

Turns out that “good” PET scan does not mean “clean” PET scan. My brain heard what it wanted to hear and parsed a completely different meaning to a very carefully worded sentence. At my follow up appointment today I found out that one of my axillary nodes was pulling an SUV of 2. Everything else is clean. My oncologist set up an appointment with my surgeon tomorrow morning to discuss another excision biopsy early next week. The closest way of describing how I feel is as if a Pamplona bull rammed me in the gut.

In English, that means that one of the nodes in my armpit is lighting up on the PET scan. PET scans detect areas of the body that are quickly reproducing and therefore “eat” more of the radioactive sugar injected about 45 minutes before the scan. It can show signs of cancer, yes, but also inflammation, scar tissue, reactive nodes, strained muscles, or any number of other things. While PET scans have done wonders for oncology, there are plenty of false positives. My subtype of Hodgkin’s, nodular schlerosing, in particular causes lots of residual scar tissue so false positives are not entirely uncommon.

The most frustrating part is that it’s SO close to being a nonissue – a PET is considered suspicious if any area lights up over a 2.5 and “normal” is 1 – 2. For reference, at diagnosis my SUV levels ranged between 6.5 – 18, with this node being over 7 at diagnosis and 2.6 (which many oncologists would consider resolved) at my 4 month scan. Hodgkin’s in general glows fairly hot with average SUVs upwards of 4.5. Some other cancers, like breast cancer, have lower SUVs on the whole. My oncologist is being conservative in recommending a biopsy. It’s a mixture of trying to appease what my doctors believe is my already fragile mental state (I snuck a look at their notes where it said “Allison has a lot going on her life” – emphasis NOT mine) and trying to jump right into action if need be.

After poking around a bit on my Hodgkin’s forum when I had time to breathe and formulate questions, others expressed surprise that my oncologist would be so hasty about biopsying the node when many oncologists would consider it normal, the elusive NED (no evidence of disease). I feel a little more relieved knowing that other oncologists would consider this scan clean. It also helps that it is not palpable and that my CT scan came back normal. Of course, it does not matter how much I tell myself these things – since my oncologist is concerned enough to suggest a biopsy then I am concerned.

This leaves me a bit confused. I don’t know what I should do – should I wait 3 months for my next PET scan to see if it resolved itself? Should I get the lymph node removed (for the biopsy – it would not resolve any potential cancer there)? Neither are good options. One leaves me stressed out living in a 3 month chunk before my next scan and postponing possible treatment even longer. The other is invasive, painful, expensive, and holds risks of complications with the anesthesia (particularly given my lung damage), lymphadema, and nerve damage. I am leaning toward the biopsy as much as  I dread having stitches in my armpit again (oh the awfulness).

If it is cancer, the next steps are, quite frankly, terrifying. Unfortunately, I cannot go back and do the same chemo again for a few more rounds. I also likely will not have the option of radiation due to the node being so close to breast tissue and the concern for secondary breast cancer.

Instead, I will need a stem cell transplant. I don’t want to go in depth into that process now, but in short, I will need what is called salvage chemo to knock back any remaining cancer. This stuff is really hardcore – so hardcore, in fact, that it destroys my immune system. In order to regain the immune system, I have healthy stem cells harvested from my body and replaced after the salvage chemo is complete. It’s an Allie, alt, delete. It would require about a month of hospitalization post-transplant plus a few months before I have either the immune system or energy to leave the house. Additionally, that absolutely zaps fertility so I would need to arrange for fertility treatment and egg freezing with some charities beforehand, since my insurance company will not cover it.

I hope that makes what is currently going on with me clear. As I was telling people at work, over the phone, and online today, I don’t think I was being particularly clear. What I have written is about as much information as I currently have. I will update as I get more info.

I don’t believe I have ever written this before in my blog given my particularly unorthodox spiritual bend, but I would appreciate prayers, good thoughts and vibes, crossed fingers, and lit candles for me. Thanks everyone.

 

Posted in Personal Stuff, Survivorship, Treatment

PET SCAN IS CLEAN!!!

Posted in Uncategorized

Waiting and waiting and…

I would really like to tell you that my life has been all unicorns riding rainbows through space since chemo ended, but they weren’t kidding when they said survivorship is tough. The past month has been a limbo – done with treatment but not really feeling “done” since I haven’t had a clean scan.  My scan was on Friday and despite pestering phone calls, I am still waiting for the results.

There’s a reason that they call those receiving medical care “patients”.

So instead of thinking about that, I’ll impress my readers with my feats of sheer will. Last week alone I have a) started my MBA, b) hosted the first [hopefully] monthly Stupid Cancer Happy Hour,  c) applied to go on Birthright Israel in December, and d) gotten in touch with the Brandeis president of Colleges Against Cancer and am excited to work with student groups to heighten awareness of cancer in young adults.  The week before, I had my Purple Party (the Hodgkin’s ribbon is violet, but that only alliterates negatively). Unfortunately I do not have pictures of all the purple foods (purple roast potatoes, plum and pluot pie, baba ganoush) or drinks or outfits.
Despite doing so many things, I am still living and breathing by my scans. Scanxiety is a very real thing. I feel like I’m going through the motions – planning things without much meat to it because I don’t know if I will be able to follow through.

People tend to forget that even though treatment is over, cancer is not over for survivors. I am painfully aware of every last statistic for every last thing that can go wrong. And yes, I also know the good statistics, but those don’t cling to my subconscious.

Posted in Personal Stuff, Survivorship

The end?

And so it was over.

My last chemo was on Friday. I walked in knowing there was a possibility to be the end but I was sure they were going to have me go until October. I did not mentally prepare for the end at all.

It’s sort of an emotional roller coaster. I haven’t felt any one thing for a period of time greater than 10 seconds since I walked in the door this morning.

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Posted in Personal Stuff, Treatment

Where’s your head at?

I do a lot of whining about chemo brain lately. And whining is the only word for it. Wahhh I can’t answer questions quickly. Wahhh simple math requires a calculator. Waaaaaaaaaaaahhhh I parked on the wrong side of the road on street cleaning day because I couldn’t parse “even” versus “odd”, thus getting a ticket.

 

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Posted in Personal Stuff

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