Marcy, the lab rat, checks in.

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Marcy, the lab rat, checks in.

This is a brief check in as my vision still slows my typing but my vision gets better by the day as does the rest of me but not with out a lot of help!

Here is what happened these last few weeks as my sister, husband and medical team repetitively help me piece together. We arrived in San Jose January 25 for a barrage of tests the next day. We also got to meet with many of the team members – all excellent. Wednesday the 28th early, early we arrived at the Operating Room. The five-hour surgery went well from what I understand. Afterwards, as mandated, I was wheeled to the ICU. It was supposed to be a maximum 24-hour stay or until I woke up. But I didn’t wake up until late day five, despite all their tricks.

Five days of this!

Five days of this!

I left ICU for the hospital then rehab.

In rehab I was helped to reboot. To return to the Marcy I was before surgery and five plus days of NO movement. In rehab, I also had a most unscheduled brain seizure – panic, 911 called, EMTS arrived and promptly treated me and relocated me to the emergency room where my clothes were sheared off, more stabilization, then a return to ICU. I had one more seizure during this stabilization phase.

Apparently, I am the first patient in which treatment seemed to trigger PRES (Posterior Reversible Encephalopathy Syndrome) and Eclampsia:-Review. Of course I am patient #5 receiving treatment # 11.

My current status is that I stay appreciative of being home, the tremendous host support we received in San Jose, at the 24-hour care from my husband and friends, two trips from my sister in the midwest in two weeks

sisters

withPam

and horrified at my current physical status (sleep 18 hours/day due to anti-seizure meds.) I have jettisoned my walker for my cane but I do everything S L O W L Y.

What is next? Good question. I do not know, a reality I hate. I do know that today I start physical therapy. I should be back in San Jose today getting tests to prep me for a second surgery this Wednesday, treatment two. I withdrew from the trial, though, when it was obvious I would be disqualified for treatment two. This allows me the opportunity to re-apply. (And get accepted!)

My big conclusion from the last month? Dying is easy. This living and recovering is very, very hard. Thank you for all the support in the latter!

love,

Marcy, the lab rat

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About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

51 responses »

  1. Dear Marcy, So good to hear from you and hoping your health and stamina continue to improve. Your fierce courage is such inspiration. Love Sandi

  2. Awwww, Marcy, you have been very much in my thoughts these last few weeks. I’m sorry it’s been such tough going – I’m glad you’re home and may the reboot go swimmingly

    Here it’s the long, slow British winter, everything feeling so slow in its way too.

    Sending lots of love

    Pete x

    From: livingly dying To: petewyer@yahoo.com Sent: Monday, February 23, 2015 5:14 PM Subject: [New post] Marcy, the lab rat, checks in. #yiv4119784864 a:hover {color:red;}#yiv4119784864 a {text-decoration:none;color:#0088cc;}#yiv4119784864 a.yiv4119784864primaryactionlink:link, #yiv4119784864 a.yiv4119784864primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv4119784864 a.yiv4119784864primaryactionlink:hover, #yiv4119784864 a.yiv4119784864primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv4119784864 WordPress.com | marcy westerling posted: “This is a brief check in as my vision still slows my typing but my vision gets better by the day as does the rest of me but not with out a lot of help!Here is what happened these last few weeks as my sister, husband and medical team repetitively help ” | |

  3. Marcy ~ I am sending you all the strength I can muster for the next phase, whatever it is. Love and light. Marcia

  4. Ah, how wonderful to know you are alive. I’ve checked your blog numerous times each day to see how the trial went and/or well … you know. Yes, dying is easy, though perhaps not as interesting as living even if you awaken only for six hours. I hope you have a room with a view to watch Spring perform its magic tricks.

  5. zoooowwwweeeee! What a journey Marcy!! I am stunned….you are one tough cookie….what i have learned from your post is that i am a wimp, a weenie, and i had better start working on my courage…….I so much appreciate you sharing …. I think of you and mike often. Much love to you

  6. As the song goes, what a long strange trip this has been. I’m glad you are still with us. I’m sorry, though, that it is such a hard journey for you. You are brave my friend, and you are in my thoughts always. Hugs.

  7. so glad you are home and recovering. Was so worried when we did not hear from you. Please keep us posted on your recovery. I also comtemplating this if HIPEC (going on Friday) does not work.
    Need to get to know more about it.
    Kind regards

  8. Dear Marcy, your continued eloquence and grace througout this journey astounds me! Holy cow what you’ve been through! And then there are smiles from the hospital bed. Who does that? Oh yeah, YOU! Thank you for staying in touch and inspiring so many of us!

  9. Wow, Marcy. Just wow. I was thankful to read your entry on Inspire and even more completely in awe of you when I read this. Your are the most beautiful and amazing little lab rat I’ve ever seen. Love and hugs to you. Carol

  10. You never fail to continue the battle. You are amazing. Get your strength back. Get ready for the next trial. Until then, know you have a lot of people rooting for you.

  11. Marcy,

    Thank you for the update. You’ve been in my thoughts and prayers.

    You are, indeed, a warrior. I. Your experiences, your fighting, help me set priorities today, and will help those in the future with this insidious disease.

    With love and continued prayers,
    Donna

  12. Amazed, grateful, and wishing you continued improvement, Marcy. Thank you for your generosity in sharing this journey. Love and prayers to you and your family.

  13. Wow is right! Amazing Marcy – after all you’ve been through and still we get an update on your terrific blog AND a smile! Sending you love and wishes that you’ll soon be energetic Marcy again, but your writing is as sharp as ever, so you still seem like Marcy to me. PS: My sister had good CT results – no growth, no new tumors. She’s having a brain MRI today, and I expect those results to be good as well. xxoo

  14. Dear Marcy,
    I have been thinking about you a lot and wondering how things have gone with the San Jose trial. Or, more broadly, with life trials thrown your way. Thanks for the update. You continue to amaze, and I hope you can continue to feel the love and support coming your way for whatever comes next.

  15. Thanks for your continued posts through so many obstacles. You know it IS ok to say “Enough” whenever you want. Dying is often easier than the alternative and you have proved your resiliency and steadfast bravery into this unknown realm of trials. Thanks for all you have done.

  16. Bless your heart. Cancer is not fun and each treatment takes a toll on your body. Marcy you have done a lot. Lab Rats of America are proud of you. It is a strong, tough crowd not for the faint hearted. Most people stay in their comfort zone, but there are a few people who continue the cause to help rid women of this deadly cancer.

    I will be doing the trial in Philly if I qualify when I go back in the spring for workup. Only thing I know is when God says come home I win. If he says stay there and help the cause to fight for women I win. For me it’s a win win.
    May God bless you and your husband!

  17. Marcy

    I was wondering how you were doing. Sorry to hear of such a serious side effect from the treatment/surgery. I am amazed at your strength and your ability to post this update. May you find continued strength and peace.
    Dee

  18. Marcy , so glad to hear from you and know that you are back home and on the mend. I am sending healing thoughts your way. I love reading your blog , it is so helpful . I admire your courage and determination. ~ best wishes in your continued recovery.

  19. Marcy, you are one tough cookie! Love and blessings to you and I hope you’ll start feeling like the “old Marcy” again soon. Thank you for continuing to blog about your experiences. I think it helps so many others.

  20. I will never forget our conversation about quality of life versus quantity of life up at Harmony Hill. Sending you love and strength as you go through this phase so that you can experience some sweet moments in your journey. 🙂
    Donne and Eldonna

  21. Heart is with you, family & friends along with healing thoughts, prayers, meditations as you continue to courageously determinedly & purposefully navigate your maze journey with its surprise uncertain unknown everchanging side paths. Hugs, love, comfort, ease, peace. -Roz

  22. Marcy, I’m glad that you’re home now and that things are improving. Let me know when you’re up for questions. There’s so much I want to know about your experience with this trial. For now I’m really glad you made it through the first treatment.

    xoxoxoxoxoxo

    Cindy

  23. ah Marcy, Twenty some years later and you still blow me away every time you open your mouth, or these days, scribe your blog. So good to hear from you. thanks for the photos, guess your body needed the rest, from geek to loveliness.

    May the flowers bloom all around you and bring comfort and love to you and Mike, carol

  24. Oh Marcy, you are still amazing you, even as you metamorphosize on all levels. It’s just lovely to read your voice, even with all the pain, suffering, change you’re undergoing. I’m holding you in loving, healing light and such joy for your being!

    One breath at a time, dear Marcy.

    And the love of those surrounding you.

    Lean into ease.

  25. Marcy, I have been following you since your trials at Penn in 2013. I have researched and studied in your footsteps as I guide my sister thru ovarian cancer treatments and choices – stage 4C. Thank you for sharing so much of you. Over the past few weeks, I have checked here often, hoping and praying that you were ok. Yes, you are an amazing lab rat! But most of all you are our teacher, scientist and our hope! Wishing you peaceful rest and strength. Ahhh, glad you are home….there’s no place like home!….Becky

  26. Oh Marcy! I just hate thinking of you in such pain and uncertainty! I try and try putting myself in your shoes but they just flop all around and give me the most uncomfortable blisters. So, I slide easily back into my own shoes and go about my own life with its joys and dramas… and where are you???
    Making your own reality, considering life-living and life-ending decisions and challenges and finding your peace. And, that is what I most want for you, dear girl. Your own peace in whatever ways you can lean into that. Sending you my love!

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