Wednesday, June 19, 2013

In Search of a Raft

Ducking out in the rain with Craig for some 
Thai food to celebrate his birthday between
a very hard-to-swallow doc appointment and
an always-enjoyably claustrophobic MRI. 

June doesn’t seem to be my month this year. Really 2013 in general hasn’t been treating me that well in terms of the whole cancer thang. Everything else in life has been wonderful, but the lymphoma has really been rearing its head far too much. Too many hospitalizations. Too many transfusions. Too many side effects. Too much pain. Too many appointments. Things have not been stable for over six months now, and the up and down is tough. I know I can’t stop the waves and I’m doing my best to ride them instead, but it is getting exhausting. I wish someone would throw me a freakin’ raft I could float on for a while.

Yes, it is confirmed that all of the pain and the fatigue I was having were indicative of cancer growth. I had a PET/CT Scan done of my full body and an MRI to take a close look at my pelvis and there is progression in old spots and new spots have developed. We have to give up on yet another treatment after just two cycles. Goodbye Gemzar. Hello VBM.

VBM is a combination of Vinblastine, Bleomycin, and Methotrexate. I have had both B and V in my frontline ABVD treatment and I’ve also had V as a single-agent therapy when trying to get into remission for my allo transplant. I have never had Methotrexate used as a chemotherapy agent. This is a pretty rough, intense regimen but one that is proven to work. Apparently it is very old school, something that was used before ABVD came to the forefront of Hodgkin Lymphoma therapy and kind of got forgotten about, though it had very good results.

My scans look pretty horrendous and my pain has been equally so. To get me out of this, we started up already with the new treatment. I had my first infusion on Monday after having my PET/CT Scan that morning. Craig had taken me in for an MRI the week prior that kicked this all off. It was how he got to spend his birthday. Then this Monday was a long day in the city for my mom and me. I vow to never again take the train home after receiving treatment. It was pretty unpleasant. The train was extra cold with A/C blasting and extra jostling. I was nauseous, then had a huge onset of pain and then an uncontrollable bout of chills. I wanted to get off the train so bad and cursed the entire 98-minutes. I tried to sleep or read but nothing worked. The last 20 minutes were sheer torture. Then it was still an hour-and-15-minute drive home, though it was much more comfortable to be in my mom’s car on the heated seat. I could barely muster the strength to get from the car to my living room couch.

The post-chemo feelings continue to today. I’m very lethargic, dry-mouthed, swollen feeling. The pain is pretty well controlled, but my stomach is very unhappy and my body pretty angry. If I let myself, I feel as if I could sleep for a week straight. But, I don’t. I’m determined to still be a functioning human being even while being back on very traditional chemo. The process is bringing back familiar feelings of my past and frankly, I hate it. This is not a long-term treatment, but again, trying something to get me out of the woods here. We have to stop this disease from growing and get rid of what’s there so that I can move onto a treatment that is more tolerable and will serve as maintenance to keep everything at bay. But right now it is just too dangerous to put me on anything that is an experimental therapy.

In the meantime, I’ve started the conversation with a transplant doctor at Fred Hutchinson Cancer Center in Seattle about the possibilities of a future second allo transplant so that if the time comes that I do get a remission from this regimen, I know what all of my options are for what to do with that remission. That whole thing is nauseating in itself to think about.

Last week/weekend I attended a writers’ conference at Wesleyan University where I was saturated with teachings about the craft and the business. It was a wonderful distraction and a good dose of much-needed inspiration. It was exhausting commuting back and forth for long days feeling like I was, but it was worth it. I need to have life balance of some sort even if that means pushing it when I barely can.

Also of note: Sunday we celebrated my dad in honor of Father’s Day and also marked my second transplantaversary. June 16, 2011, was the day that I received my sister’s stem cells and began the growth of my new immune system – my “rebirth,” so they say.  It also would have been my friend Steve’s 38th birthday had HL not finally taken him far too soon. I cried a lot, for him, for his wife, for me and my family and thinking about what we’ve been through. I cried also because I’m so happy to still be here two years after such a traumatic experience. I cried because I’m still not cancer free and that I know there is a lot more to endure. The memories of it all are still very raw: both the ones that make me shudder and the ones that make me smile in triumph.

No, where I am at right now is certainly not ideal. I need a lot of help. But, I am here and that is what matters. I am doing my best to make the most of it and to not allow myself to fall into the pits of discouragement.

Sick or not, I still have to get groceries, cook meals, do laundry, pay bills, keep up our house, research treatments, keep on top of my medicine and appointment schedules. Sick or not, I still want to love on my husband, play with my dog, hang out with friends, spend time with my family, go out to dinners and breakfasts and see movies and plays, listen to poetry, read, write, go for walks and get back into yoga again. Thank goodness for those things or I don’t know where I’d be.

No matter how shitty I feel, the summer weather is still beautiful, the flowers striking, my love for those in my life stronger every day. This is what I tell myself to calm myself down when the fears get to be too much. I know we are teetering on the edge of no options. I’m not sure what the plan is if the disease doesn’t respond to this traditional regimen either. In truth, I am getting scared. I can’t do much else but cling desperately to hope.

In just a couple of weeks – June 29 – I’ll get to celebrate my 31st birthday. 31. I couldn’t be more thrilled to keep reaching these milestones, though I do wish I could be running, not crawling, to them.  


  1. 1 The Lord is my shepherd, I shall not want.
    2 He makes me lie down in green pastures;
    he leads me beside still waters;[a]
    3 he restores my soul.[b]
    He leads me in right paths[c]
    for his name’s sake.
    4 Even though I walk through the darkest valley,[d]
    I fear no evil;
    for you are with me;
    your rod and your staff—
    they comfort me.
    5 You prepare a table before me
    in the presence of my enemies;
    you anoint my head with oil;
    my cup overflows.
    6 Surely[e] goodness and mercy[f] shall follow me
    all the days of my life,
    and I shall dwell in the house of the Lord
    my whole life long.

  2. Hey Karin,
    Keep pushing on. You have endured so much if you can just get through this and get to the point where you can get another transplant there is hope!
    There is always hope, it is just harder to find when you are exhausted from so much pain. You have always been one to go deep within, to seek relief mentally and you can still do this. I have followed you from the beginning. You have a strong desire to live! Most people understandably give in and give up. The pain, the prodding, the unknown and all the side effects, most cannot endure. IF you get to that point, I understand and support you. However, you have a strong desire and a WILL that just won't let you quit even if a part of you may want to.
    Easy for me to rant on like this as I sit here with no pain and no experience what so ever of enduring all that life has thrown your way. I want you so much to be able to enjoy life pain free, cancer free. There is always hope. Sometimes we need a group to carry us through and I believe all your followers are reaching out to carry you at this time of uncertainty . We all want to be your raft. So let go as you relax, sitting in a chair or lying down. Breath in, breath out, continue to do this as you wrap yourself with a white light. Feel the warmth in your pelvic area, feel love and energy form all whom support you. See your self on the life raft, sun beating down as you float on the river being surrounded by hundreds of people, just helping you float and releasing your pain.
    Warm Regards

  3. Karin. I have been following your blog since the very beginning....I feel as though I have been on this journey with you even though I don't know you personally. All I have to say is that you are an amazing women and an inspiration to all!!
    Please know that they're so many people thinking and praying for you to beat this disease!!
    Very warm regards

  4. Karin

    I've been following your blog as well for a long time. I'm a alumni of the Non Hodge club. My experience was not as long as yours but I understand the feelings of treatment failing and having to move forward while tired, depressed and scared. I just want you to know that you inspire me daily to fight my own current battles in life because of the way you face life's challenges. Count me as one who sends you lots of positives.


  5. I am hoping for stability for you, and I'm sorry that you're in such a scary place with your disease and treatment options. Sending love and light to you, with gratitude for your beautiful, honest words about what it means to live with and in spite of cancer.

  6. Karin, I'm sending you lots of love and prayers for healing, knowing that these offers are helping to build the raft you seek - the raft that all of your readers, family, and friends are creating together as we hold hands and visualize a pain-free Karin in remission.


  7. Dear Karin,

    I'm another one of your long-time readers who never seems to post a comment but who checks your blog faithfully several times a week and thinks of you often with affection and admiration. I live out in Seattle, so I am finally moved to stop lurking and start talking. I just wanted you to know that you have at least one buddy out here who would be happy to help out with errands and logistics if it comes down to another bleeping allo- transplant. I'll be keeping an eye out for how things are trending and will contact you by email if it looks like you might be coming out our way.


  8. Dear God,
    Enough is enough. Please- I beg of you- give the Doctors a drug concoction that will kill this beast called Cancer living in Karin's body and everyone else affected with it as well. I will continue my prayers each night as will others but she and so many like her have fought a good fight and need a new chance at life without experimental drugs and scans and live a pain free, drug free normal life. If I could pray for a miracle it would be that she wakes in the morning without any sign of cancer and is able to enjoy her life with her family and dog here on Earth for a very very long time. In your name I pray. Humbly, Bec

  9. Karin,
    As others have mentioned, I too am a long time follower of your blog, and yet I have never commented before. After reading your post tonight, I just felt I should offer another post of encouragement.
    I found your blog in the early stages of my HL diagnosis and your entries gave me a great deal of information and hope. Your positive attitude and determination was (still is) contagious. So thank you. Thank you for being honest, and candid, and for helping me feel like I wasn't alone.
    I just want to encourage you to keep fighting, keep loving life and soak up every moment. You have touched the lives of so many through your life and your battle with this awful disease. You are an amazing woman, full of compassion and strength.
    Please know that I will continue praying for you and your family. And thank you once again for being such an inspiration.

  10. This comment has been removed by the author.