Rocco Maiolo's Ramblings and Musings

Hello Friends & Family: For some of you, this might be brand new information; for others, you are intimately aware of my journey in the last 6 months.   And then there are others who are somewhere in the middle. At the risk of being impersonal, I thought this would be the best way of getting out my most recent update regarding my lymphoma. Last week I had a biopsy of a mass in my back that showed up on a CT scan.   Contrary to what I was told, the mass turned out to be the same kind of lymphoma that I was already diagnosed with – low grade, follicular.   Since it had only grown by a few millimeters, I was given the option of keeping an eye on things and doing another CT scan in 3 months with the hope that things wouldn’t change. The doctor, however, was concerned that this mass is too close to my spine.  Option 2 was chemo.   I asked what she would recommend if I were her uncle.  She asked if I had anything against chemo. When I said no...

(June 2, 2014) I was in a waiting room today.  Waiting for a pre-op appointment for a procedure I’m having this coming Friday – a biopsy on a soft tissue mass along my spine.  I drew this picture.  I’m not much of an artist (that’s being kind to me). I had an appointment with my family doctor this morning and this other appointment in the afternoon, so I took the day off.   But I’m working anyway.   I can’t not work because it piles up and then I have twice as much the next day. The family doctor is nice, but, admittedly, she doesn’t know much about follicular lymphoma or soft tissue masses.   She’s not an oncologist. She suggested they might want to remove my affected lymph nodes.   I told her I don’t think that’s how it works with non-Hodgkin’s lymphoma. She said she prays that the growth in my back is benign.   She asked how I’m doing emotionally.   And if I had people I could talk to.   Like a pastor. The answers ar...

I’m in between light and dark day and night birth and death departure and arrival I left but I’m not there (not even sure where there is) somewhere between non and infinite there is finite looking back (for a quick check and then forward again) gives the illusion that the horizon has moved closer in the grand scheme it hasn’t it’s always one twilight away I think Tom Waits would understand I’m in between there and there then and then grey and grey and sea to shining sea (please remove your hats) somewhere between Wordsworth and Blake and Eliot there is the splendor of the grass and infinity in the palm of your hand as you lay etherized upon a table I’m in between waking and sleeping the cliché and the ineffable in a world where you could Google it and your first hit would be: “God is ineffable, a beautiful word” in between east and west there is Eden the word was after all in the beginning and the word was with God and ...

Someone who has lymphoma told me that it's a roller coaster of emotions.  Sometime between this post and the last, I had an appointment to go over my results. It was a very good appointment: bone marrow, bone sample, blood work all came back good.  The CT scan showed 2 very slightly enlarged lymph nodes.  One centimetre or less is normal.  My two were each 1.2 cm.  The doctor says that typically when someone is first diagnosed the CT scan usually shows a half dozen or more nodes each 7 or 8 cm. My wife and I were prepared for the worst.  We thought I'd be getting chemotherapy.  As it is, I have 3 months of watchful waiting and then another CT scan and more blood work. Thanks to all my friends and family for their out-pouring of prayer and support.

I don’t want to seem morbid or dark, but I must say, there are things that have struck me as ironic in the last few weeks since I’ve found out that I have lymphoma. For better or worse, my wife and I have decided that the right thing to do is let people in on our journey.   So, a few days after telling my immediate family, I told my extended family, colleagues, former colleagues, and close friends.   I’ve let people know through phone calls, in person, emails and social media.   My wife linked my last blog post to her Facebook. It’s been exhausting, but it’s also been good for my soul.   The outpouring of love has been overwhelming.   It has brought me to tears several times.   One colleague with whom I’ve been working for only a short while said she felt like she’d been “kicked in the gut.”   A former student – one of the brightest, kindest people I’ve ever known – told me to “add [her family’s] voices to the swelling chorus ...

January 31, 2014             Less than a week ago, I was diagnosed with low grade, follicular lymphoma.   The surgeon who did the biopsy was the one who called.   She rattled off all these words: test came back positive low grade follicular lymphoma oncology medical not surgical CT scan test any questions?   I said, “yeah, … can you repeat the part about… well, the whole thing?”               So she did.   And she followed it, predictably, with, “Any other questions?”             “No.”             “Low grade” sounded good. “Lymphoma” not so much. Told my family.   Did a bit of research.   Watched a Youtube video of a Swedish surgeon. Family was pretty much devastated.   I was mostly in shock.   Now, it’s mostly sur...