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

Well it’s almost over, right?

It’s almost 3AM on the night before another treatment, and the anticipation and anxiety of yet another day sitting in the infusion lounge is keeping me awake.

Luckily the wonderful Randall Munroe, creator of XKCD, put something I have been thinking about a lot (and mostly in how to explain how I feel to everyone) in a handy dandy webcomic.

 

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Posted in Personal Stuff

Shingles? Nerve Damage? Let’s just got with major ouch.

Last week I noticed that my right hip was a bit more numb that usual. As one of my more strange chemo side effects, my hip and outer thigh has been numb on and off for the past 4 months. Starting on Wednesday night, it started to get painful. By Thursday, even my clothes were incredibly painful.

I have been incredibly mindful of my risk for shingles due to being immunocompromised. Shingles are the adult manifestation of the chicken pox virus that cling to one of your nerves, causing pain and a rash. My oncologist gave me heavy duty anti-virals to fight against shingles, but also said that if the rash had not appeared by Sunday that we would need to reevaluate.

Well, it’s now Saturday night and there is no rash, but my skin is still just as painful.

The other option is that it’s some form of nerve damage. I’ve had peripheral neuropathy in my hands and feet, making them numb and at times painful. Normally chemo only effects these peripheral nerves. However, that doesn’t mean that it can’t damage other nerves. I honestly don’t know what my options are if I have true nerve damage in my hip or how long the pain would be expected to last.

Basically, it feels like the worst sunburn being poked at constantly. When something ACTUALLY touches the skin, it’s mindnumbing, blinding pain.

I’ve been alternating ibuprofen and percocet, with cold compresses made up of dissolved aspirin and aloe vera gel on the skin. These barely seem to take the edge off.

Beyond anything else physically that I have faced over the course of treatment, this pain is by far the worst. It is making it hard to sleep, but also giving me even more emotional fatigue since it’s such a mental exercise to try to meditate the pain away.

 

Posted in Personal Stuff, Treatment

Cancer and Body Image

When you think of someone with cancer, you most likely think a few things: pale, bald, wasting away. When someone doesn’t fit into that mold, life gets a little tricky.

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Posted in Personal Stuff

What’s Your Latitude?

Fellow Hodgkin’s survivor Roger Lumpp posed a question to the Hodgkin’s support forum I am a member of earlier today: what is your latitude? Where is the place you escape to when things get tough and you have to dig in your heels to get through one more scan or treatment? He is encouraging survivors to write essays as part of a project as an exercise in positivity and meditation through medical crises.

For me, it’s Iceland. My 3 months living there were clearly a big turning point in my life and prepared me emotionally and professionally for the challenges I would face in the years to come – including the challenges of cancer. It also gives me something to look forward to. Reykjavik is a short 5 hour flight from Boston and I have several couches to crash on. I simply cannot wait to go back. Going back as a post-cancer gift to myself will be a new challenge: traveling alone. And I can’t wait to push myself.

 

My essay is as follows:

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Posted in Personal Stuff

I have a confession

I suck at updating blogs. You know there’s a problem when your dad is pestering you (through your mom of course) to get cracking on the blog.

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Posted in Personal Stuff

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