What a couple of weeks it’s been!

I’ll warn you now that this is a long and not all positive blog post. If you’re needing a quick read to pick you up – this is not it. For that – read about the incredible success of Bridges’ And Still We Rise fundraising campaign here. If you’re up for it, read on…

Ok, where to start? Since I last wrote with the good news from pathology report, I’ve learned and experienced a lot. I now realize that my “cancer free” post was a bit premature and my photos showing me looking like I feel great, are misleading.

So… I’m laying it all out on the table.

I’m still dealing with continuous complications from the second surgery (to remove the rest of my lymph nodes). This has meant endless trips to see doctors, urgent care clinics and long emergency room visits. Not to mention endless pain and 24/7 compression wraps around my chest and shoulder/armpit.

I’m also dealing with some horrific latent chemo effects that no one talked about. All of the nails on my fingers and toes and separating from the nail bed. I can’t use my hands for anything requiring pressure – Dylan even has to zip up my pants. Those of you who know me well, know that my nails are my “thing”. So this is an especially horrific experience for me. I’m determined to not loose any nails, so I’m doing everything I can to protect them as they grow out. But really? Come on, cancer has taken so much already… not the nails too!

While navigating all of this, I have learned that my radiation will be much more intense and harder on me physically than anticipated. And, I might need more chemo after that! WTF!?!?

Fortunately, I was able to meet with my radiation doctor for two hours yesterday to learn about what radiation will look like and ask questions about my two pathology reports. 

After meticulously dissecting my pathology reports, googling almost every word to create a translated version, I still couldn’t make sense of it all. So, I compiled a list of important questions to help me really understand what the reports mean, and where I’m at with my prognosis and treatment plan. Inquiring minds want to know, and my radiation doctor was a great resource for this.

Here is what I now know:

Why would my treatment be getting more aggressive than initially planned if my second pathology report did not find more cancer? And, why in world would I need more chemo now?

While the second pathology report indicated no cancer in the removed lymph nodes, it turns out it’s complicated. The specific cancer I have is very aggressive and very fast growing, as such it responded very well to chemo since chemo hits fastest growing cells hardest. And this was demonstrated in the great amount of shrinkage we saw in the breast tumor. However, they did not expect to find ANY tumor left in my breast or lymph nodes after 16 weeks of dose dense chemo. Because of this, they have to assume I had more cancer already growing than initially thought or visible on scans. The standard of care is to treat me as if the cancer may have spread single cancer cells into my neck and chest lymph nodes. These will not be visible to the naked eye or on any scans available in current technology.

It’s extra complicated as I’m 45 years old. Most of the scientific studies to date are for those 45 and under, or those 45 and over, and they have dramatically different results and recommended care guidelines. So, we treat for worst case scenario, and hope for best case outcomes. I’ll learn more about chemo potential on May 12. Given how the rest of my treatment has gone, better safe than sorry. Though I’m not happy about it, I’m not ready to give up the fight. I’m more determined than ever to win this war.

What will radiation look like for me? 

This answer was hard to hear. I will be getting the highest level of radiation possible over a much larger area of my body that I had planned for. It will cover my left breast, armpit, shoulder, left side of neck up to my ear and across the front of my chest to my right shoulder. My lungs and heart may also be unavoidably exposed, but there will be a lot of CT scans to get it all just right to eliminate, or at least minimize, the exposure to my heart and lungs.

I will receive radiation 5 days a week for an entire month. They can’t give me any more than this at the high levels I’ll be receiving. There will be intense short-term side effects that will accumulate and compound each day I receive radiation. I will experience severe burning on all exposed skin mentioned above, with bright red painful skin that will likely blister and peel. It won’t be pretty.

I will also experience increasingly severe fatigue, and by the 3rd week, they warn me it will be worse than chemo. Ugh. That will get worse each day through treatments and last about 2-3 weeks after they conclude. It may also cause complications for my heart and/or lungs, depending on how much exposure they have to endure. Steroids will help off set those heart and lung symptoms if they occur.

There will also be longer term side effects of skin darkening and tightening that will ultimately fade, then turn into thick and tight scar tissue. This will potentially affect the range of motion in my neck forever. and long term implications for my health. No fun!

Much longer term complications can include radiation induced cancer after 10 years, among other nasty things. Oi vey! So much to consider, so much to endure. However, I do so appreciate knowing what to expect so I can begin to mentally prepare.

When will I know I’m cancer free and who will make that determination? 

Another hard answer to hear. Pretty much – I won’t. In another year or two they’ll have a good indication if I’m in full remission or not, but I’ll be under very close oncology care for next 5 years, with continued but less frequent oncology care coordination for another 5 years. If after 10 years I’m still in remission, that will be a huge success. And that is what I’ll do!

After 7 1/2 long months of fight already, you can probably imagine how worn out and depleted I am physically and emotionally. This is a lot to process – and a lot to read I’m sure – and I’ve been shedding a lot of tears. So, I’ll be spending some time increasing self care, self reflection and moving through the waves of emotions as they come. Not pushing them away, but letting them flow through, and out.

More to come soon… 💗

I’ve got lots of fight in me still!

12 Replies to “MISLEADING”

  1. karen Ricoy says:

    Beven, I am so sorry. How exhausting and difficult. Sending love.

  2. Rosemary Hands says:

    Sweet Beven, my heart is breaking for you, for Dylan and the girls. Your journey has been so hard. Please visualize healing arms surrounding you and giving you strength. That’s what I’m sending to you. I’m keeping you in prayer for good outcomes and minimal side effects. I love you so much.

  3. Jessica Rojas says:

    Beven sending you and Dylan all my good thoughts and prayers! I can’t even begin to explain how much you inspire me.

  4. Barbara Coombs Lee says:

    Beven dear, how brave and mindful you are to ask hard questions and take in the answers. Knowledge is power and now you can hope and prepare from that place of power. Blessings of the spirit to you and your loved ones.

  5. Cathy Reynolds says:

    Holding you close in all my thoughts. ❤️Cathy

  6. sue pirter says:

    Oh, Beven – So sorry to hear all of this. The boxing gloves sum you up. My thoughts, energy and support are with you. -Love you, Sue

  7. Alayna says:

    Love you Beven❤️

  8. Lauren Begley says:

    Sending you so much love. You are amazing.

  9. Schlifka says:

    I’m so sorry, Beven. I was really hoping you would have a much better experience that all of this. I’ve heard from nearly every single patient that it’s incredibly frustrating to not really have a set answer. I’ve also heard that recovering from the fatigue is sort of like 2 steps forward, 1 step back. As always, please let us know if there is anything we can do.

  10. Nicole Campbell says:

    I alway read your updates and keep Jeremy updated as he’s not one to read blog posts 😉. We are sending lots of love to you and the family! ❤️❤️

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