We are still celebrating the good news from last week!  Here is the official “Impression” (or succinct conclusion) of last week’s PET Scan:

Resolution of the previously seen hypermetabolic adenopathy in the mediastinal, right internal mammary region and right lower neck.

The results were delivered to us by a nurse and councilor – and we’ve not had a chance to speak with Dr. Stevens about the results. So there is still a lot we don’t know, and a lot of questions we still need to ask – including what to expect for future treatment, and if there was indeed anything worrying about the Scan results that we haven’t yet been told.

But I haven’t given a true detailed update in a while, so let me catch you up…

 

HOW I’M FEELING, PHYSICALLY

For the most part, I’d had a very good run physically (knock wood!).  Both my sixth and seventh Chemo treatments have gone by with very minimal side effects, and I’ve been much less fatigued by these treatments than by most of the previous treatments.

After the sixth treatment, Luis and I actually went to Rough River for a weekend and did a nice hike – just three days after treatment!  A big thanks for our friends Jeremy & Johnny for letting us use their cabin for the weekend. Rough River holds such special memories for me as a child, it was nice to get away.

And this weekend, Luis and I went to Indianapolis for a small work engagement at Hoosier Park and got a chance to do some sightseeing around downtown Indy.  And yesterday, we met up with Jill and walked about 6 miles – just 5 days after my chemo treatment!

Also, I’ve been able to get back on solid foods within 48 hours of each of the last two treatments, and generally a regular diet within just a few more days.  For some reason, I still can’t even begin to think about Mexican food without getting nauseous (which is sad, because Mexican food has always been my FAVORITE food). But everything else is normal.

The one lingering side effect that I cannot seem to shake is the constipation.  Like clockwork, if I get chemo on Tuesday, I just know that I am not going to poop until at least Saturday and probably not until Sunday.  No matter how many stool softeners I take… So, if you’re someone going through treatment reading this – good luck with that!

And with the hair loss – it’s difficult to tell how much hair I’ve lost on the top of my head because I keep it trimmed so short – but my eyebrows are almost completely gone now.  I’ve always had very thick, bushy eyebrows (which need to be tweezed to make one brow into two). But now, I would say less than 25% of the lashes remain.  I’m not happy about it, but I’m not too bothered by it either.

 

SCANXIETY

While I’ve been feeling physically well, the past few weeks have been incredibly difficult to get through.

About five weeks ago, I developed a new lump on my neck.  This new lump was above the original lump (which has disappeared) – on the same side of the neck, but more underneath my jaw rather than down by the collar bone.

At my sixth chemo session, I had a nurse confirm that there was indeed a large lump on my neck – a new growth.

This of course freaked me out right before my interim PET Scan, which had already been delayed once.  The scan had been scheduled for April 10, but after a couple days of severe anxiety, I asked to have the scan moved up to as early as possible. They rescheduled for April 5.

My anxiety would get so bad that I would be subject to bouts of crying – which is very unlike me. I’ve honestly not done a lot of crying throughout this journey – but I’ve done a heck of a lot of it the last few weeks about this new lump on my neck.

I sought the professional help of a behavioral oncologist councilor.  She was very nice and easy to talk to. She prescribed me Xanax, which I’ve found helpful.

When Luis & I went in for my 7^th chemo session on April 4 (the day before my PET Scan was scheduled), the nurse said that Dr. Stevens had decided to delay my PET Scan by several weeks.

Uncontrollable tears. Ugly crying. I couldn’t stop worrying about the lump and WHY would he delay a scan?

We finally were able to get them to move forward with the scan on April 5.  We were ready to change cancer institutes to make it happen, but luckily didn’t have to go down that road. Although, I really think there was a LOT of unnecessary stress.

FWIW – Failing to have an interim PET Scan until after the conclusion of four full cycles of ABVD treatment is NOT standard practice, and I have no reason for why Dr. Stevens wanted to do that. But it does bother me.

 

RESULTS

So, what we’ve been told is that the results are all “GOOD NEWS” and that this shows a resolution of the cancer.  We’re happy, and excited, but there is a lot more ambiguity than I would like – and a lot of questions we still need to ask the doctor.  We have out next consultation on Tuesday, April 18, when I am scheduled to have my 8^th chemo treatment.

There’s just a lot of medical terminology on this one-page report about which I have not been able to properly ask questions…

For example:

HEPOTOBILIARY: Slightly mottled uptake without evidence for focal legion. Liver background SUX mean, a reference for comparing FDG studies is 2.1 g/mL.

Okay, great… I know about half those words, and from Googling, I think Hepotogiliary means Liver?  Also from Googling, I think that a rule of thumb for then Good/Bad level of FDG uptake is 2.5… soooo, should I be worried about a 2.1?  And if so, how worried?  I much prefer a black and white contrast (why can’t it just say ZERO?)  rather than worrying is 2.1 is too close to 2.5, or whether that number even really matters?

CHEST: Physiologic FDG avidity is seen in the mediastinal blood pool and myocardium.

Okay… So, no number here, but some of that doesn’t sound so good to me as a patient who doesn’t really know what any of this means…  That sounds like they DID find something in my chest?  But I don’t have any numbers to misinterpret, so I guess I just have to sit on that one…

HEAD/FACE: Physiologic FDG uptake is seen in the visualized regions of the brain, extraocular muscles, large salivary glands and oropharynx.

Well, this is just terribly worrying and the reason I can’t stop taking my Xanax or probing my neck… that reads to me like they DID find something in my neck – and the salivary glands are right where my new big lump is…  So did they find something?

NECK: Physiologic of the uptake is seen in the neck muscles.

Okay, again, this reads to me like they found something… which doesn’t support their conclusion… but again, I just don’t know enough to be drawing conclusions.

So, to wrap this section – I’m still suffering from extreme anxiety, even as I exude a positive attitude and continue to go about doing things in my life that make me feel ‘normal’ (like small weekend getaway trips, or going out to dinner).

And I’m not going to beat myself up over my anxiety, either, because I think it’s normal.  Not just now, but probably for the rest of my life.  I doubt that no matter what happens, or however many years removed I get from treatment, that I will ever be able to truly trust my body.  Nor will I ever be able to cope effectively with a ‘normal’ popped lymph node without some pretty severe anxiety.  But I think that will just be a part of my new reality.

 

MOVING FORWARD

So, I guess a long story short is this:  The conclusions of my scan – the one sentence at the bottom – says it shows resolution.  But there is enough information above it to keep me worried and stressed for the next eight days.

Assuming all of my concerns are overblown (and they could very well be), we still don’t know what my path forward in terms of treatment is.  It’s conceivable that Dr. Stevens will decide to finish treatment after this 8^th chemo session.  Or, he could decide to continue through and finish all 6 cycles, which would put me in chemo through mid-June.  Or, hypothetically, he could present the pros and cons of both choices and let us choose which to do… which would be incredibly stressful, and a really hard choice.

Simplified, here would be the pros and cons of continuing treatment for six full cycles (vs stopping treatment now since the PET Scan shows it’s gone)

Pro – Less likelihood of a recurrence by making most sure that all the cancer – even the microscopic amounts – is fully gone.  The degree to which is reduced the likelihood is not certain but not hugely significant – they may give me a number, but it will be small.

Con – Greater likelihood of long-term side effects including secondary cancers, lung damage, and heart damage due to more chemo treatments. Long term chemo side effects are worth much consideration especially in younger patients like me, who plan to live another 40-50 years, as the chance of these side effects go up not only every subsequent year of one’s life, but also up with each additional chemo treatment.

So, it’s an imperfect, complicated choice.  And that’s not even considering our general readiness to just get back to a normal life.

 

THIS BLOG

Recently, I’ve received a few people reaching out to be – via Facebook and this blog – saying that they or a loved one have found some comfort and understanding on my blog.  While it’s always hard to hear that someone has to walk this road, I really am glad that others are able to use my blog as a resource to try to understand the process, put a chronology to it, and mentally get ready for what they have to go through.

When I was diagnosed, I found melissabeatslymphoma.com – it was the most helpful blog I found on the internet. Melissa was my age, presented with nearly the exact same symptoms (lump on neck), was Stage I (I was Stage II)… and she detailed her journey.  It helped me understand what I was about to go through, and her positive attitude inspired me. We’ve been able to connect and stay in touch through my treatment, and it’s awesome for me to see her living her life to the fullest, now years into remission. I look forward to that myself.

So if you’re someone reading this that is going through treatment, or recently diagnosed – please reach out if you have ANY questions or just need someone to talk to! I really am so happy to answer anything or talk about anything (really, anything! Look at how much I talk about poop on this blog!).  It’s easier to go through this with SUPPORT, especially of someone who has gone through it.  I am so lucky to not just have a huge, prayerful support system – but also a mother-in-law who recently beat Non-Hodgkin’s Lymphoma, as well as a cousin who is a hematologist.

 

PRAYERS & POSITIVE THOUGHTS

We’re glad to have received what we believe to be good news – but we still ask for lots of prayers!  We think they are working, and we want them to continue working!

We took in some Easter candy stuffed Derby Glasses into the staff at Norton Cancer Institute as a big THANK YOU for saving my life last week 🙂

Much love to everyone!

-Merv