Saturday, July 6, 2013

Difficult Realities

Block Island crew (minus 1) enjoying a perfect day.

I realize I’ve been absent from blogging and thank you for the concerned comments. If I haven’t gotten back to messages, e-mails, text, please don’t take offense. Life has been focused highly on mere survival the past couple of weeks.

Yes, I did celebrate my 31st birthday with a wonderful trip to Block Island with Craig and a fantastic group of fun people. After days of rain and storms, the skies opened for us to enjoy a lazy day of perusing the adorable island- the native trip for Craig and me.

That Monday previous was the first time I’ve ever lost control crying in a doctor’s office. My mom took me in for my second infusion of the VBM and when describing to Dr. Dailey the blinding pain I was in, I couldn’t even get the words out. All I could do was cry and my mom had to fill him in through her own teary eyes.

I got through the chemo in hopes that this pain was just a flare of disease being killed. The rest of the week got progressively worse in the pain department and what I needed for pain control was making me so tired and so woozy.  So was the chemo. So was the disease. I almost canceled on the weekend birthday trip, but pushed and was so glad I did. What was the difference if I was sitting at home on the couch in pain or sitting on an Adirondack chair overlooking the harbor in the sun? Luckily, the non-narcotic Toradol was holding my pain (an intense version of Aleve) so I was able to be clear-headed, but I had to come off of it after the weekend due to possible liver damage it can cause.

Everything got worse. I started having chills and fevers and my lymph nodes in my neck are only expanding by the day. Pain was getting out of control. My parents took me into NYC to see Dr. O at Columbia last Wednesday as he wanted to look at me in person after hearing my symptoms. He agreed with my instincts that the chemo wasn't doing anything. I should have felt some improvement. Instead, it was only making me feel like shit on top of shit by dropping my blood counts and making me even more weak and lethargic. We're discontinuing it. In looking at the long list of treatments that I've had, there's really no sustainable options left. 

He started talking about what a fighter I’ve been and what a trooper I’ve been to handle all of this and I just wanted the talking to stop. He said he’s never seen someone that VBM did not work in. I knew where the conversation was going. I was so tired, I felt like I was just staring at him feeling so defeated and simultaneously trying not to make eye contact with either one of my parents knowing that if I did I would burst into tears. The disease is getting too out of control and there are scant viable options left. This is coming from the doctor who flies to China, Germany, Switzerland, Italy to speak specifically about Hodgkin Lymphoma. His name is synonymous with research surrounding the disease and he has seen hundreds of difficult cases like mine. He is also an extremely positive doctor with so many creative solutions. Unfortunately, the strain of my disease is real fucking creative, too.

What he is suggesting as kind of a last-ditch option is a blast of a very toxic chemo regimen called IVAC. It has come up in the past as a kind of “save until the absolute end” option. I would need to receive it in the hospital over four days with constant monitoring. It will be very rough, I will get mouth sores and vomit and lose my hair again and there's a slight worry that I wouldn't bounce back from it. However, it can open some bridges for me.

Right now my tumor burden is too high to use any burgeoning, experimental drugs, Dr. O gently explained to me. Yes, they may go at the cancer in a different way, but they are not going to be effective against the high volume of cancer I have right now. They will not make me comfortable and out of pain. Basically, I need a chemo strong enough to match the disease right now or we're only going to be kicking pebbles and making my body weaker and maybe even ruling out those clinical trial drugs for the future when they would be more effective for maintenance. 

If I do not do the IVAC I will die from too much stress in my body. I can't continue like this. Even though I don't have disease involvement in or around major organs, my body eventually will just shut down with the continued stress response it has to be in to deal with the pain and tremendous inflammation. A recent blood test (Sed rate) came in at 143 mm/hour marking the inflammation in my body. It should be under 10. As Dr. Dailey explained to me, it is very difficult to know how long I would have - weeks? months? Before a “near-death” experience. The lymph nodes in my neck are so large that you can see them sticking out now.

Should I choose to do the IVAC (which would start as early as Tuesday), it could bridge me to the following things: 

a) There is one more chance at a cure and that is a second allo transplant. This one would be what's called a haploidentical transplant and would use one of my parents or my brother as a half-match. It is very risky and obviously would be very intense, as my first allo transplant was. I would do this at the nation's leading transplant center: Fred Hutchinson in Seattle. I've been in talks with a transplant doctor there who knows Dr. O (everyone does) about seeing what we can do at this point. The two of them have been in talks.

I have too much disease to do it at this point (which would be the purpose of the IVAC), but I don't even know if there's anything else that would affect me being an eligible candidate. We also don't know yet if there are any reasons that my parents or Michael (who would need to be at least a 50% match) would not qualify as donors. We have to get as much as possible in the works to see if this is even an option and to be ready so that when the IVAC gives me a near-remission, we can jump on it, fly my ass to Seattle and start up that whole process. Again, this choice would be a tremendous risk that I might not make it out alive from or that I would end up with permanent damage as a result of Graft vs. Host Disease. 

b) If it clears up a lot of my tumor burden, I can move onto less toxic clinical trial drugs with the intent of keeping things at bay. But if I do this I could lose the one opportunity from the one remission I ever get to get a cure from it. I'd continue with maintenance drugs as long as each one kept working and live out as much life as possible relying on continued scientific developments to come up with new things for me to try with hopefully a decent quality of life. There's no way of knowing how much time this would earn me. 

c) This will help me to make the decision of whether it is time to stop all of this. I'm told that if IVAC does not work then it's safe to assume that nothing in the world will work, again this is coming from the foremost expert in the world. We'll then know that these tumors are just treatment resistant and then I'll need to make a decision of what to do with that knowledge. At the least, I’ll know that I tried the harshest thing I could (in addition to four years of constant treatment and two stem cell transplants) and it didn't work and decide that now it's time to focus on the quality of the end of my life and on being comfortable - not more arbitrary treatments and hospitalizations. 

There have been a lot of tears among my parents, Craig, me, my doctors. I am mostly in disbelief and just so confused how this happened so fast. No, I am not ready to die. Even in pain, I still love my life. I'm faced with some really big decisions right now about how I can still try for some more time, and also how those decisions will effect what very likely could be my last few months of life. Do I want to spend it in intense treatment? Do I want to be far from home and again brought to the rawness that was some of my experiences with my first transplant? I'm very overwhelmed, very scared, so tired and very sad. I am not angry, just more confused than anything as to how this could happen so quickly but then again I guess I’ve been dodging bullets for a long time now. I've tried so hard and feel so defeated. How do I make the most of the life I have left? When do I say that enough treatment is enough and that it's time to just be comfortable and enjoy what remains. No one has a crystal ball.

I'm writing this from Hartford Hospital right now. I had to come into the ER because I was having fevers upward of 103 and they wanted to rule out infection. Plus, I was severely anemic and have already received two bags of blood. Dr. Dailey came over after his shift at the cancer center to talk with me. He too is concerned about how harsh the IVAC will be on me, but has a great amount of respect for Dr. O and trusts his instincts. He too talked about that if I don’t do this, then we’ll need to look at taking comfort care measures as there is nothing else for me right now. He thinks I should give it a shot and then I’ll know that I did everything that I could.

He talked candidly and softly and gently as he always does to my mom, Craig and me. While he was saying all of these serious things like how sad it would be for him and my family, but that they’d all support my decision, all I could think about was how severely I had to pee. I had called for a nurse to let me go several times. I was tethered to heart monitors and an immovable bag of blood. I thought that I would literally wet the bed while having one of the most important conversations of my life. I gave my mom the glaring eyes and whisper across the room and she knew to go out and try to recruit someone. Then, I finally had to just apologize to Dr. Dailey and say that I couldn’t concentrate. I had to pee so bad. He picked up the call button himself and said that there was a “bathroom problem” with his patient.

Finally, someone came and I had to stumble out of my own end-of-life meeting to the sweetest urination relief of my life. It was especially funny because it reminded us all of when Forrest Gump got to meet the president but had so many Dr. Peppers all he could say was “I gotta pee” when he got to him. I – who very rarely drinks soda – had fittingly sucked down a Cherry Dr. Pepper an hour before. The laugh took the sting out of things.

I’m on my second hospital overnight now. My fevers continue. It’s obvious that they are tumor fevers, but they need to wait for blood cultures to come back to confirm that and ensure I don’t have a blood infection. I just continually rotate between fevers and sweats. The two bags of blood helped a lot of with my energy and clarity and the extra steroids they’re giving me has kept my pain at bay. I should be going home in the morning.

However, if I go for this IVAC (I am leaning toward yes, after some mental prep) then I’ll be back in here on Tuesday to start and will be in for at least four days.

I am not giving up hope, but rather communicating the realities of the decisions we're faced with. I welcome miracles and assure you that we're staying positive. Just because I am writing this out doesn’t mean it’s going to go down this way. I’d welcome spontaneous healing with open arms. Please keep all the good juju, prayers, chants, visualizations coming that have gotten me through this far. I am forever grateful.

I am also so fortunate to have a husband and a family that are so respectful that these are my decisions to make for my life and for my body and that they will support me fully in whatever I choose. I know it is beyond difficult for them, but no matter what, they make me feel truly loved.

Same goes for my friends whose kind words as they found out about how real my situation just got have already done so much to heal my heart, which I thought was literally breaking.

I am by no means in this alone. I will have help and I will have comfort and I know that the love I already have all around me with only explode further as we walk down this precarious path together.

Thank you to all my blog readers for your continued support and positive messages of encouragement. Even when I can’t respond to them all, please know that they truly mean the world and help to fill my soul when I feel very helpless.

I’ll be searching my heart and my gut for some answers and when I make a decision, it will be the right one. I am confident in my instincts and the strength and the drive and the fire that I still have within me. I am the one with the power to direct that flame. Even if this is my time, I know that all who love me will never let that light die.


  1. Karin,
    I'm so sorry. I am praying for you and your wonderful family. My heart hurts for you. Stay strong and keep the faith.

  2. your words say it all -instincts.strength, drive,fire, power --- yes you have them all - no matter what, when, where or how it is in all of these that you can be KARIN DIAMOND ... no matter how you can do it .

    you have all of these to decide what is best for Karin . no one else does////// carry one strong warrior .... ..>>>>

    carry on to your next chapter==== knowing always you have an incredibly strong powerful force backing you ... it is all of us who are with you in so many levels. realms, dimensions yes never doubt the power of your backing.

  3. Karin,
    Is it possible to re-biopsy and confirm it is still Hodgkins, and with this biopsy seek to molecularly map the tumor and determine what is the cause for resistance/mutation at the cellular level. There maybe many drugs out there that are commonly used for other types of cancer that would otherwise offer benefit. God Bless you and your family.

  4. So so sorry Karin! Stay strong.. my heart is with you and your family ♥ Kara OBrien

  5. I am so sorry that you have been in such pain and now face an enormously difficult decision. I'm glad you are surrounded by good people, both in your life and your medical team. Hugs

  6. I am so sorry to hear that the cancer is forcing you to make all this difficult decisions. My only advice is that you have to do what's right for you. Deep down we all know what's best for us - stick to that, whatever it may be. I'm praying and hoping for better days to come:) Big hugs from Anniken (Norway)

  7. Karin
    May God hold you in his arms to comfort you.

  8. Love to you and your family, Karin. Good luck with your decision making and prayers that IVAC works. I have so much respect for you the way you handle adversity, with such strength, optimism, and humor.
    lots of love and hugs to you!

  9. I am so sorry to learn that you are facing such a difficult decision, and I thank you for sharing it. I admire the way that you balance a clear-eyed understanding of the realities of a precarious situation with a sense of humor and optimism. I hope that I am able to do the same as I face my own treatment decisions. You will be in my thoughts, with all best wishes for strength and peace.

  10. Prayers and love to you, Karin. Your wisdom leaves me breathless and humbled. Keep true to yourself. LP

  11. Karin,

    I am sending you all of the positive thoughts of healing and miracles in the world. You and your words and ability to live life every day has been a constant reminder to do the very same with my own brand of NHL.

    Please know, that whatever you decide to do, you have shown everybody what it is like to really live. I have never met you, but wish I could have the honor of knowing you in real life. you truly rule.

    xoxo k

  12. Karin,

    Sending you love and support. You are an amazing woman who's touched the lives of many in a most inspiring way. God bless you.


  13. Hey Karin, prayer love and hope are certainly surrounding you at this time. Let everyone following your blog make a commitment : on Monday morning at 6:00 am sit in a quiet space and all of us send healing light to surround Karin. Let us collectively participate in her healing process & choices. Let us pray for her pain to subside. Mostly though let us pray for a miricle! I would pray for a miracle to free her from this cancer. Aa miricle for Karin to take this next step without much pain, sickness and complacations. We all want to do something and we can! Please commit to Monday July 8 @ 6 am to gather and join me in a collective spirit as we pray, chant and send healing thoughts and visions to Karin.
    Dear Karin my heart is feeling heavy for you and your family along with your friends.
    You are faced with some very tough decisions no one so full of life should have to make. You have lived your life fully despite all the pain you have endured. I am an avid reader from the beginning. I believe in the power of prayer, I believe in miricles and I believe there are reason unknown to us why we do not get miracles we ask for.
    By some chance you are unable to read or write while undergoing the treatment you are looking at I want to tell you how much I have enjoyed getting to know you through your blog. It seems like you kept me in check with what is important and that which is not!
    Like today for example. I had to be at work at 10 am . I went to get in the car but it was not there! I called my husband, he had the car said he would be right back. In the meantime my boss called and said you have some customers at the store. I ran out to the truck but he took those keys!!! So now I am mad ad I can be. I storm down the drive way and start walking. Now I am fuming because of the heat and I am sweating. Because I am so made I am walking with full power and sweating even more!!! You know the mad at husband walk. If I remember I think you had a similar mad walk going on with Gregg in NY a few yrs back. Our boss's husband ride by. Turned around and picked me up. He is 82. A unbelievable guy. Still works everyday and lives life too. I go on to tell him how I am so mad at my husbands stupidity... Taking the car, knowing I had to be in work and not leaving the farm truck keys! Ah I said marriage,patients and forgiveness are a lot of work! He looks over at me,with his old wise eyes, chuckles and said "yep I've been practicing 50 years" I called my husband said what were you doing knowing I had to be at work? He said I went grocery shopping. Oh great how can I be made now? We made a plan to have lunch. I told him I was no longer mad, I could have made the same mistake. Not planning on taking as long and time got away. Shit happens!
    Later I sit down to read my emails, I get your email. I am reminded after reading your blog.... At least I am healthy enough to walk and blessed to have the energy to walk with the power of the mad walk. I am bleseed to be able to feel anger, let it go and move on. Blessed for right now that I do not have life or death choices to think about.
    You hit home again. You are my remixer not to sweat the small things.
    I have grown to admire you and care about you. I also thank you for your willingness to share your journey.
    Mel (alpaca farm

  14. Karin, I can't imagine the emotions you and your family must be experiencing right now. I will never understand why this disease has gripped you so tightly when it lets others pass after ABVD. I know you have an amazing team of medical professionals to guide you through this next step and I'm glad for that. I hope that whatever you choose, you end up with something that works. Seattle is lovely this time of year. Sending love and strength from yet another stranger whose life you've touched. Sarah B.

  15. Karin, if you find you have the will and the strength to continue the fight to another round in the ring, I hope you can gather some additional fortitude knowing that so many people are praying for you and wrapping you and your family in caring.

  16. Karin,

    You don't know me in person, but I have been following your cancer journey from the beginning as it started about the same time as mine. My prayers and wishes are with you.....................

  17. My heart aches for you. Sending good juju and hope that you'll have a calmness of spirit and clarity of decision with whatever you do.

  18. You are going to make it! Stay strong!

  19. if i could have one wish come true, it would be for you to beat this damn thing!! and i pray that the decision you make will enable that to happen.....your courage and candor are truly deserve and have earned a rejuvenated life free of cancer.

  20. Karin, I started following your blog shortly after my own cancer diagnosis, at age 40, and have read every post you've written. I feel as if I've been on this crazy ride along with you (minus the hideous side-effects). You have a legion of followers like me who feel we know you through your writing and your unique ability to convey exactly who you are through your words. None of us wanted to hear this news, and you can rest assured that there is a collective heart breaking as your readers make their way through this post. I hope it brings some measure of comfort to know that your writing has knit together a tribe of supporters -- most of us who have never met you -- who are cheering for you, supporting you, standing in awe of you, cursing this disease, and offering up whatever version of prayer we ascribe to. Your strength in facing this damned disease has blown me away, and your honesty about the toll it's taken on your body and mind are vital in conveying the wretchedness of cancer. You've truly touched my life with your writing, and I know I'm not alone. Sending the very best of the good thoughts and healing vibes from Houston.

  21. The only "right" decision here Karin, is the one you make. Healing prayers & light surround you. May your heart & soul find calm in the midst of the storm ---the pain,,ach,,that's for the doctor's to deal with,,,and they can. Thanks to you for sharing with us all. You are an inspiration.

  22. I'm holding you and your loved ones in a bright light. You are an inspiration and a teacher to us all. Sending you courage, strength and much love.

  23. you are an amazing, strong, inspirational woman. you have touched the lives of so many people and I thank you for touching mine. may god comfort you and guide you in this difficult decision.

  24. Karin, you're in my prayers and my heart as you face this next step. I wish you strength and calm in equal measures. And the wisdom to know when to pee :-) much love, Emma

  25. "Any one can give up, its the easiest thing in the world to do. But to hold it TOGETHER when everyone else would understand if you fell apart, NOW THAT'S TRUE STRENGTH!"

    This was a quote I saw this morning and is you 100%!!!!

    I admire your spirit. Praying the IVAC BLASTS the crap outta your cancer!!!


  26. Love, love, and more love to you and your family.

  27. Like others, I found your blog when my husband was diagnosed with NHL last year. I have read through every post you have written and have gained so much strength, inspiration and courage through you. The way you have lived your life and handled the shitty cards you have been dealt with this illness is a true inspiration. You are a remarkably strong woman, stronger than most. I know you will handle these difficult decisions with grace and will make the most out of whatever path those decisions take you down. Even though we have never met, you and your family are in my thoughts and prayers. I wish nothing but peace and comfort for you.


  28. Karin, I have been following your blog for 2 years, since my then 20 year old daughter was diagnosed with HL. I am always in awe of your strength, your insight, and your persistent determination to define yourself and your life on your own terms. You have succeeded thoroughly, and you manage to reach beyond your own suffering to help others. Your wisdom and your love of life are an inspiration to me everyday. I will continue to pray for you and send you every good thought as you face the next chapter in your journey. May all your innate joy buoy you up as you choose your next steps. blessings, always.

  29. Karin,

    I don't know you - I say hi to a friend of yours at the gym (Krista - up in Ashland MA) and she once shared your story with me. I have read your blog for a long time and you have been and will be in my prayers. You are one of the most inspirational people I have (n)ever 'met' ! We all know that our time here is short, and I pray for more for you. Whatever that may be, you have touched many more people with inspiration than most will in 500 lifetimes. Be strong, as you are surrounded by love and your journey will be bright.


  30. Praying for you Karin...please let us know which direction you decide to take so I can fine tune my juju!

  31. Karin, I am so sorry you have to go through this. My heart aches for you and your family. I have read your blog for a long time and never cease to be amazed at your positive attitude. If anyone deserves a miracle, it's you. Sending good thoughts and prayers your way.

  32. We all LoVE and support any decisions you make and will continue to pray for you either way. I want to thank you for showing/teaching me what real strength is and how to live life as one could last forever here on the physical plain yet knowing tomorrow is never promised. You are a true Hero to so many and have fought a horrific fight that many of us would walk away from. Tonight my prayers will be for you and your family and whatever your decision may be that it is filled with alot of glorious love and laughter with painfree days/nights and a bathroom nearby. You deserve a cure from this wretched bitch. Much Love- Bec

  33. Wishing you clarity, strength and a circle-of-love fortress all around you to kick-out and keep this disease at bay and away. All this and a whoosh of miracles.

  34. praying for healing - however it may come.

  35. Sending you and your family lots of love and hope for a positive end to everything you've been through. You are so strong and I have tremendous admiration for you! I wish only good things for you!!!!

  36. God bless you and help you, and heal you, dear precious girl. Keeping you close in heart and prayers, where you have always been. I love you. Irene

  37. Hi Karin,

    Thanks for sharing your story with us! I'm checking several times a week for updates. Actually, I've found out about your blog by googling for protocols of differenct chemotherapy regimens. I own a PhD in biochemistry and work for a major Swiss pharma company (name is not important) in the field of hematological malignancies, especially lymphoma. Before starting to read your blog, survival rates often appeared as "cold figures" without any emotions to me, but now I see what it means, when we're happy about a 70% response rate. It means 30% of the people will not profit at all, and the fight goes on. I visited two big international conferences on lymphoma treatment last month in Sweden and here in Switzerland and can tell you, things are moving ahead, but everything is much more complicated than it should be...... Stay strong and thanks again for sharing, it is important. Best wishes from Switzerland, R.

  38. As always, thanks for sharing your ups and downs. I hope to hell IVAC works. And I hope the visualizations and breathing and everything keep you as pain free (if there is such a thing right now) as possible. I am 35yo survivor (dx @ 32 a little a after you I think). Your blog is the only cancer blog I have read since the beginning of my Dx. You write beautifully and with courage. I am thankful for you.
    Keeping you in my thoughts,

  39. Karin,

    You are beyond an inspiration; you are truly amazing!!! Continued prayers for you and your family. Praying that you receive your miracle....blessings.

    Laura Loyot

  40. You've been inspiring me since I first found your blog following my HL diagnosis early this year. I have been cheering for you and sending my own brand of 'positive energy' your way. But when I read this post I got down on my knees and prayed with all that I had. It's an honor to follow your journey and to be part of the circle of supporters who are cheering, pulling, and praying for you.

    With deep support and warmest wishes, MP

  41. Karin,
    You are absolutely beautiful, inside and out. Keep your head up. You truly are a sign of hope and perseverance. keep on keepin on. Mine and my family's prayers will be with you through your journey.

  42. Karin - as always, my heart goes out to you, and I am sending you all my positive energy and love. You are the bravest most amazing woman I have ever known.

  43. Karin - You are truly the bravest most amazing person. My heart goes out to you, your friends and most of all to your family. Your words in your blog are so truthful and well written. I enjoy reading about you every day and I admire the way you are so candidate with your words. God bless and I WILL keep sending all my positive energy, love and prayers your and Craig's way. Stay STRONG, and keep up with the positive attitude.

  44. Hi Karin,

    I met you at the SF Writer's conference. I was just checking in to see how you're doing.

    I'm so sorry that you have to face the IVAC chemo. You are such an inspiration--my prayers go with you.