Thursday, July 11, 2013

IVAC Day 3 Update

I have been so moved by the comments left after my last two blogs. I am so touched and so in awe as to how we can all feel so connected by relating to each other through common human experience. When it comes down to it, I think we all just want to feel comfortable, loved and happy and I can't thank you enough for helping me to feel that in an incredible way even during these most difficult of times.

Thank you for letting me into your lives by following along with my journey. I so much enjoy hearing how it relates to your own experiences - cancer or otherwise and cannot tell you how much joy it brings to think that my words could help spark a little inspiration or perspective shift. What an amazing thing language and technology are to be able to connect us around the globe! Forever humbled.

I wanted to just give a quick update to say that I am three days into the inpatient chemotherapy IVAC at Hartford Hospital. I wouldn't say it's "fun," but there haven't been any big complications or reactions. I certainly know that I'm on chemo: bloated, swollen, achey joints, foggy headed, flushed, extremely fatigued, etc. I receive the Cytarabine twice a day, but only for a few days then I receive the Ifosfimide and Etoposide each evening in addition to a drug called Mesna to protect my bladder that I receive throughout the night.

Because Cytarabine can cause neurological issues, I have to do the steps of a drunk driving test before each dose and sign my name and prove I can walk normally. It can also come out in my tear,s so I need to put steroid eye drops in twice a day.

I may be having some of that expected urinary tract inflammation as I was in quite some pain this morning; we're monitoring that closely. I'm also a lot more tired today.

Fevers have calmed down, so we're hoping this is a sign that the drugs may already be working. I have also not had any pain breaking through my Fentanyl patches. These are big changes to when I was admitted on Wednesday absolutely drenched having broken a 103 degree fever on my way in and in severe, severe pain that they had to immediately get me on meds for. These may be two very good signs. But I'm also on Decadron steroids along with the chemo, which could be helping these symptoms as well so don't want to make any assumptions.

I am very comfortable here. I say it every time. The nursing and PCA staff are phenomenal. Plus, they have all treated me many times now and there's a lot of comfort in that. They gave me the "best room on the floor". It's private and large with a nice flat screen TV and a view out to a meditation garden.

The hospital recently changed their food options as well. Items are much healthier and less processed and you are able to order off a select menu vs. the two tired choices they would offer for each meal. I've been really impressed.

This whole thing is a six-day process. As long as I am doing okay then the schedule has me getting discharged on Sunday morning. It will be at home when the side effects will really set in. I'll be getting a shot here of pre-emptive Neulasta to kick up my WBC production as all three of these drugs are going to take a huge hit on my counts. It's expected that I'll be back to the clinic and maybe even hospital next week to get blood products or look into issues. I can expect to feel very weak and crummy, will have to be very careful around germs and all that jazz. I am also going to lose my hair again. I am beyond sad to say goodbye to my soft curls, but it's a small price to pay, I suppose.

I have family and friends to help and will need to rely on them to get me through these next couple of weeks.

When my blood counts do recover - probably at least two weeks, then the plan is to do a second and last IVAC cycle. We would not do more than that - too toxic.

In the meantime, we are working with the transplant coordinator at Fred Hutchinson in Seattle to get things moving on background testing, evaluations, testing of my parents and brother as potential donors so that things are in place should I hit a magic remission and should I decide I want to go that transplant route. Time will tell.

Right now, it's time for Mad Men, lunch and a nap.

For those of you who don't follow me on other social media outlets or through the HuffPo, here is a link to my latest piece: "Cancer Is Not All I Have." If you enjoy it, please share. You can "fan" me here and receive updates anytime I have a blog published there. 


  1. I have read your blog for years now but haven't commented until now... twenty years ago I had and beat hodgkins I guess I had what they call the easy form but I know how hard I still had to fight for six months. You have been doing this for six years with such grace and dignity you truly are an inspiration to all and put our daily issues into perspective. Keep up the good fight and just know that you have so many thinking of you.

  2. Happy to hear your voice. Hospital food has come a long way here too. I used to look forward to the quiche. LOL I like that you guys are formulating a plan moving forward - you guys have such a good team of people to not let up and keep pushing for help.

    Thinking about you!!! Keep ROCKIN!

  3. Thanks so much for posting. I was hoping you would, but thought that would be the last thing on your mind! Now, I, and everyone else who reads your blog, can stop checking it about 20 times a day! I hope like hell this treatment is working for you. Thinking of and praying for you constantly.

  4. So glad to get an update from you! I'm happy to hear you are tolerating it fairly well so far and I hope next week continues. It's encouraging to hear that your fevers and pain have improved. I am hoping and praying it's the IVAC! Stay strong and know there are so many people out here rooting for you, praying for you, and sending positive vibes out there for you!


  5. Thinking of you and sending prayers and good thoughts your way-

  6. I have been checking your site all day, but as someone said above, I thought we would be the last thing on your mind today. I'm so glad you are tolerating this treatment so well and I hope it is your key.

  7. Karin--I have been taking a break and not checking in on you for a while and now I am sorry I waited almost a month to read your blog. So much shit has happened that I am nearly crying.

    I will email you a private message but I for one am so so glad you are doing the IVAC.
    The other Karin Diamond

  8. In honor of your 'Light As A Feather' post a few months ago, I took some time on Tuesday night to relax, breathe deep, and mentally cover you with feathers. I hope and pray that you've found the answer with IVAC. Sending much love, light, and hope from Texas.

  9. Karin,
    You don't know me, but we've been through a lot together. It sounds like you are getting some much needed relief. You recently wrote about how you needed a sign and you got one from your grandfather. That same day I found my grandfather's dog tag from WWII. I've been wearing it ever since. I hope my grandfather is looking out for you too, but he'd probably want you to learn how to play poker.

  10. Karin I just read your Huffington article and have to tell you it's WONDERFUL.
    I probably don't need to tell you this but you should be very proud of your writing.

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  12. Karin.

    I'm another one that has "stalked" your blog. I could laud your praises for pages, but most simply you are an AMAZING writer. The latest Huff post article was honestly so raw and moving--that it stands up to some of the greatest literary works I've read (and I've read a lot :)

    You give so many of us SO much just by letting us read and learn about the grace with which you've handled this. I'm humbled to even be able to leave you this note.


  13. Hi Karin,
    Thank you for updating, thinking of you (as usual) and pulling for you! I'm just a stranger who is old enough to be your Mom.
    Oh, Mad Men! Great show, I recently watched the first five seasons and loved it. Donald Draper even has a resemblance to my late Dad, it is very strange to watch him.
    I have to say, I have had a terrible last decade (horrible, painful divorce after twenty-three years of marriage, loss of my dream home of nineteen years to foreclosure and a forced move from my beloved home state)but I have my health, and when I start falling into my black hole of depression, I remind myself of your struggles, and I know if you can make it through each day, I CERTAINLY can. My problems are miniscule compared to your struggles. You are admired, though you didn't ask to be put in this position, because of your honesty, grace, and humor. I am sooooo hoping for the best with this latest treatment.
    Hugs to you,

  14. Karin

    Keep going. Sending you strength, love and hope with all my being.


  15. Hang in there Karin - we are all pulling for you, every single day.

  16. Karin,

    I've followed your blog dutifully since the first time your sister Kristen ever posted a link to it on her Facebook page. Since then I've been stalking every step of your journey (in the least creepy way possible)and I remain in awe and sincerely cannot help feeling anything but inspired by you.

    Today I had my first job interview for a potential writing gig. That's big for me, because writing is something I love too and I never thought I'd find any kind of way to make a feasible living doing it. One of the questions they asked me was what kind of blogs inspired me, what did I like to read? Since this is a gig writing about outdoor products I racked my brain to think of the right answer.

    Having just read your latest entry and knowing Kristen had recently left to see you, I literally couldn't think of anything but "eyes peeled always" and how nothing has touched me to the core like your writing in a very long time. So I told them about you, and your blog. And how you've smirked in the face of adversity and always reminded me to be grateful for the smallest of things, every second of every day.

    I think you know that you make a sizable difference, not just in your world, but in a much bigger way. Know that some girl in Salt Lake City couldn't help but to sing your praises during a random job interview, that she sits on the edge of her seat waiting for updates and your next gem of wisdom, and that her perspective will forever be changed because of some words she read that you wrote.

    You are amazing, and beautiful, and a slew of other favorable adjectives I'm sure you can fill in because you are good with words and such. If not, consult a thesaurus. I am happy to know you are surrounded by family and positive people right now, because that's exactly what you need to keep on truckin'...which you better do because I need something good to read on the internet that's not celebrity smut.

    All my love and well wishes,

    Tanya S

  17. Karin,
    You are amazing! I have followed your journey for the last 2 years. The strength of your chi is beyond description. I work with cancer patients and am also a cancer thriver myself (ovarian dx age 27). i try to pass your wisdom on to the families i see.. many of them on a similar road..

    sending you healing prayers everyday
    helene m

  18. Karin, you shine so brightly and are truly living your life purpose: Being the voice that connects us to our truths. WIth infinite love & gratitude, Lisa

  19. Karin,
    I started following your blog shortly after my non-Hodgkin's diagnosis in the fall of 2010. Your strength, courage, and beautiful writing have inspired me and served as a powerful voice for the young adult cancer movement. You and your family are in my thoughts and prayers.

  20. Good to hear from you. Hang in their Karin! So many of us are praying for you. May physical and mental comfort embrase you during this time.

  21. Your courage is contagious. Support, love and prayers coming your way.

  22. Holding you in my thoughts

    Virginia (in Hartford)

    PS What a wonderful writer you are--so clear, strong, true.

  23. Karin, you are a hero cast in Odysseus" mold. His greatest strength was to endure one challenge and hardship after another for twenty years before finally arriving home, when he faced yet another. Your endurance and perseverance are epic; an oral poem should be written about you that will be told throughout generations. The ancient Greeks believed that immortality was achieved though this type of heroism. All our lives are finite, but however your story continues, you have already achieved immortality. I know you've got a lot on your plate right now, but I hope you're working on a book! I can't wait to read it! Please!

  24. Thinking of you and praying hard that you can push through this treatment and go for the big C....CURE! Hang in there! For your family and the rest of us who have grown to love you for your courage and grace! Jackie

  25. I hope you are home and feeling strong. Hang in there....

  26. Celebrate we will for life is short but sweet for certain. Sound familiar? Keep pushing up LoVE for you sweetheart! Keep fighting and we'll keep praying. The Best is yet to come!