I made a new friend

Recently I was asked to be a friend on Facebook with someone I didn’t know.  Mutual friends?  Nope.  Creepy guy?  Nope.  Instead she was married with two kiddos.  Hmmmmmmm.  I ignored it for a few days, and then one day it came up in convo with Krissy.  “Maybe it’s someone who follows your blog?”  Ok, so I decided to check it out.  Sure enough she had sent me a 5 page message (ok, I’m exaggerating) introducing herself and why she asked to be my friend.

Tessa is recently thirty and experiencing her third relapse with Hodgkin Lymphoma.  From checking out her blog, she’s as brave and determined as I am.  She had I have about identical chemo track records.  We are both finding ourselves now relying on BV (the chemo I started in December) as our last chance for remission.  I’m a few cycles ahead of her, and it sounds as though her doc has the same expectation of full remission for her.  Sweet.

She and I have chatted back and forth about this chemo and learning a lot from one another.  She was heaven sent.  She’s reminded me that although I have full faith and trust in my oncologist, it’s okay to question their actions.  It’s okay to ask for further details.  And it’s okay to ask why.  It’s not that I don’t ask questions or feel comfortable having those conversations, it’s more that I’m in a comfortable place with my oncologist.  I forget to do these things.  She has been a huge part of my life for the last 8 years.  She tells me what’s going on with my body, and then instructs me with what needs to be done.  I have no need to question or challenge, I just say thank you and go along with it.  She’s kind of like a parent – she takes care of me.  And she always knows best.

It’s been nice discussing our questions and prognosis’ (or lack thereof) with Tessa.  Support groups are always helpful when feeling a bit lost in cancer world, but Tessa is different.  We are guinea pigs on the same drug.  We have the same diagnosis.  We are the same age (you don’t often see that in support groups).  It’s been nice bouncing our thoughts and concerns off of one another that are specific to our
chemo and cancer.  I’ve said it before; this chemo we are receiving is very new to the cancer world.  The FDA just approved it last fall.  This is also the first chemo to be discovered specifically for Hodgkin’s patients in decades.  Sure it’s been tested for a few years during its trail stages, but there isn’t enough data yet about how long we are expected to stay in remission, or if being cured is even a possibility.  Like I’ve said, I have full confidence in my oncologist and her team.  But she and her team are unfortunately blind to my future with no real history from this drug yet.

There is one big difference between Tessa and me - our treatment with BV.  My oncologist has me staying on the full 16 cycles because in their studies they have seen patients experience longer remission rates.  But her oncologist has tried a different approach with their relapsing lymphoma patients.  They have seen success with only needing a few cycles of treatment until full remission and then follow up with a clinical trial chemo and bone marrow transplant.  OOOMG.  Those are two VERY different treatments.  Tessa has a very rough path ahead of her.  Is her doctor on to something that mine is unaware of yet?  We have both confronted our doctors about our new found knowledge and they have both responded the same - no one really knows what's really going to work until more time allows for more research.  Awesome.  But one thing is for sure - we are both fighters and plan on battling until we win.  It's nice to have a partner in crime!  If you want to meet Tessa, check out her blog, Tessa's Cancer Journey #3.