totally rad update

19 out of 28 radiation treatments under my belt.  So far, pretty good.  I go in daily on weekdays and then get the weekend off…just when things start normalizing they zap me again on Monday.  Skin looks and feels sunburned, but so far no peeling or blisters.  Rad doc seems to be happy my skin isn’t worse, so I guess that’s something…?  The muscles of the chest being radiated are tight and sore, but yoga is really helping with that.  The effects of radiation are cumulative, so it will get worse before it gets better, but there is a light at the end of the tunnel!

Surgery scar is healing well, or so I’m told, and I still have some stubborn residual cording (scar tissues from the lymph system that stretches like fish line from my underarm all the way out to my wrist).  It’s ouchy and annoying, but not debilitating.  I work with an Occupational Therapist once a week and I really like her (I mean, if Emily Nowakoswki isn’t available to drive up from Richmond once a week, I’ve got the next best thing!).  We have been using a cupping technique the last couple of weeks (it’s ALL the rage these days, you know!).  Mine are silicone instead of glass and use flexible suction rather than heat to massage and help blood/lymph flow, but it’s still pretty amazing.  I like being able to dig in there and really feel like I’m doing something to the cords.

During an appointment with my oncologist a few weeks ago, she indicated the possibility of going on another clinical trial involving targeted chemotherapy.  Wait, what now?!?  Well, because the tumor grew instead of shrinking during chemo, and there was a significant portion still active (about 80%) at removal, plus a few cells were still hanging out in that one lymph node, she’d like to try a study that would involve ‘next gen sequencing’ to see if there is a drug out there that has been identified as being effective against certain genotypes of triple negative breast cancer.  Yeah, I didn’t want to hear about more chemo options having just finished that Hellish part of my life, but if there is a drug out there that they are relatively sure will work on my particular cancer cells and get rid of them FO SHO FO SHO, then I’m willing to try.  Still working out some of the insurance logistics since the study and treatment would be through the Medical College of Wisconsin at Froedtert Hospital in Milwaukee and my HMO doesn’t reach that far into the great East (seriously, you’d think I was asking them to treat me in China…).  The study grant pays for the initial screening to determine if I’m eligible (genotyping, EKG, some other bloodwork) and drug itself, but administration of the drug, doctor visits, and supportive care (i.e. more drugs) is considered standard care as if I was getting any other chemo and my health insurance provider is on the hook for it.  Authorization paperwork is flying back and forth between my docs and the HMO and we’ll see how it all shakes out.  Really, as far as health insurance providers go, GHC has been really awesome thus far throughout my diagnosis and treatment (a few hiccups along the way, but generally due to administrative hangups at the hospital and not on the insurance end), so I consider myself lucky all in all.

As for my mental health, well, that’s seen much better days.  This cancer journey has been an emotional roller coaster, as to be expected, with normal ups and downs.  Then I hit a definite wall a few weeks back.  I can pinpoint the day, Sunday Aug 7, that I woke up in a funk and have not been able to shake it since…  Not sure exactly why, probably lots of reasons both physical and emotional, but my brain decided I needed one more thing on my plate to overcome.  My therapist says I’m having a ‘major depressive episode’.  Ya, I’d say!  I was doing all the right things to stave off depression – practicing yoga daily, talking to folks at Gilda’s Club, taking an anti-depressant/anti-anxiety/sleep aid, seeing a therapist, meditating, working, socializing, eating (relatively) healthy, walking and getting out in nature…having FUN and enjoying life!  And still the depression came for me.  I would describe it as a deep, dark abyss that swallows all the joy and laughter and happiness you throw at it.  GULP!  Getting a grip on my mental health has been much harder to deal with than any physical illness or trauma this cancer diagnosis and treatment has thrown my way.   Adulting has become HARD.  Chores, work, even hobbies all feel overwhelming.  Getting out of bed in the morning and facing the day is HARD (sometimes it takes multiple attempts – get up, get back in, get up, get back in, GET UP DAMN IT!).  And I used to love mornings…now I dread going to sleep at night because I know I will wake up to crushing sadness and anxiety.  Thankfully my mood usually improves throughout the day, but the depression is always there in the shadows, waiting…  I’ve never felt so weak, so alone (even in a group of people!), so utterly helpless.  There is no amount of positive thinking that will make me ‘snap out of it’ (believe me, I’ve tried!).  It’s a struggle every. damn. second. every. damn. day.  I have to push myself constantly to do normal things we all take for granted and, in that way I suppose, I have never felt stronger.  I had no idea the courage needed to take on depression and while I’m certain I’ll come out victorious, the here and now, well, it hurts 😥

Dang, that was depressing 😉  Let’s have some good news…drumroll, please…look at all that freakin’ hair, guys!  The photo on the left is when I buzzed it back in February and the photo on the right is from yesterday (and it’s growing as I type, I’ll need to update soon!).  Eyebrows are there, but much lighter…same for the eyelashes.  Progress, anyway!

It’s a bit hard for me to see these two photos side by side (and not just because the perfectionist in me could not get my mouth to make that same shape no matter how hard I tried…).   I see things in the depths of those eyes that others don’t.  I see the raw optimism of the gal on the left, the fighting spirit of an innocent, and I mourn the loss deeply.  On the right, I see the physical and mental struggles, the pain, the depression and anxiety, a body and mind that will never be the same, changed forever in the span of a few short months.  The woman on the right is one who has seen some harsh shit – but lived to tell.  I see a warrior (with the scars to prove it!).  Broken, but putting the pieces back together to make a new whole.  Slowly, sloooooowly, but surely.

-JEB

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3 Responses to totally rad update

  1. Geri says:

    I’m so sorry that you’re going through this. Your honesty and openess about the chemo, the radiation, the depression moved me. You have the most amazing spirit and courage. I understand there may be times when you doubt that, but I hope you can read this and know it’s true. You love life, you have great energy and a beautiful spirit. How can I help and support you? it’s not enough to read a blog and say “I’m with you…” what can I do? XXX

    Like

  2. Kristin says:

    ❤ u
    Virtual hugs
    xoxo

    Like

  3. Hi Friend,

    I was happy to hear from you and get an update. As I said to you, the radiation treatments were not bad for me and and I actually felt empowered by them. Your gift of writing helps me understand what you are going through and I can remember some of the same feelings. Your photos are interesting and may I say, your second photo is of a more relaxed person who is wise and shows a certain calmness in the storm. As a person who has gone down this path, I know that you are doing a one-on-one with the disease and it’s never easy. But, please know that I am thinking of you and sending you good thoughts. Please take care and keep moving forward. It sounds like you have a great team of doctors, friends and family, and even a new treatment protocol to explore.

    We are tagging monarch butterflies now – come join us!

    Sue

    Like

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