Sunday, July 3, 2011

Allo Transplant: Emotional Toll

I have been in this hospital room for 25 days now. I'm expected to be released in two, on Tuesday, July 5. Of course I'm excited about this release but I'm also so incredibly scared, confused, unsure, worried, all of the emotions that come from being in pure isolation, surrounded by the same four walls, to kicked onto the streets of New York City.

No one ever pretended that this was going to be easy, not even myself, but I just never could have fathomed the brutality that I've gone through. This transplant has been by far the most difficult thing I've endured in my life and I'm nowhere near the end. I've started going over discharge instructions and just do not understand how I am going to ever fit back into that world out there. For at least six months I'll still be on extreme precautions, and it can take up to a year for my body to full recover and rebuilt it's immune system.

I don't want to look at the packet of limitations anymore: no restaurants, no crowd, no events, no exposure to anywhere that there is sickness lurking, no un-Purelled babies, no walking past construction sites, no cuddling with my dog, no dusting, vaccuming, cleaning, or gardening, no public transportation, no fresh food, no berries, no fruit, no veggies, no cheeseburgers unless they're cooked to gray and oozing white liquid; no swimming in rivers or lakes (which means no kayaking), no alcohol for six months.

I have to be on constant watch and report anything as small as a pimple that pops up as it could be a sign of graft vs host disease. I have many bone marrow aspirations in my near future to check how much of my blood is Kristen's and how much is mine. I have a PET Scan in two weeks so see if there is any lymphoma hanging around and if so if it's time to unleash this new immune system after it, which means I'll also suffer the effects of it potentially eating away at my eyes, my skin, my bodily functions.

The pills will be tough. I'll be leaving with about 20 that I'll need to take multiple times a day. They've been weaning me off the IV form into the pill form over the course of this week in preparation of me going "home" to NYC's American Cancer Society Hope Lodge. Some are very large and uncoated and I am a big baby taking pills. For a few months I'll need to come into the clinic to check the therapeutic levels of the immunosuppressant tacrolimus and sirolimus drugs in my body to know how much to take each evening.

I am grateful and honored that I am now considered "engrafted" with my sister's cells meaning that all of my blood cell levels are back to normal, so her stem cells have done the job of growing and transforming into what's been needed there. However, I am disappointed in how awful I feel. I thought I'd be better by now. I have never been so tired in all my life – I'm tired all the time. I'm like a little baby that falls asleep eating, typing, even talking in mid sentence. And I am so weak. I feel that my legs have lost all of their strength and I'm so scared that I'll never get it back. That is devastating to me. I fell over in my bed the other night and I literally did not have the muscle strength to get back up. Taking a shower completely wipes me out of energy and I need to have Craig or my mom or an aid help to get me dressed. I'm doing the stupid physical therapy exercises as much as I can but there is only so much I can do in this small space that is just so conducive to healing and sleeping.

I am just about off the pain pump that had been on constant drip, which is great as I've hated being in that drugged stupor, but it's also made me realize how much it was covering. Every muscle and bone and my body is achey – much of this relates back to the five days worth of Neupogen shots I received to push my sister's new cells into my blood stream and bring my counts where they need to be. My bone marrow has been doing a tremendous amount of work.

I worry all the time about how I'll fit back into society. I worry about if I'll ever feel strong and healthy again. I worry about what opportunities will be left for me when I finish this. I worry I'll never be able to relate to anyone ever again because no one can fully understand – and I don't ever want them to. At least the doctors and nurses have seen it before and they know how awful it is and when they look at me and say: "You're doing really well," I can believe it. They can explain to me why my diarrhea is inhuman in texture and size. They can explain to me why I'm puking up foam like a rabid dog. They can explain why my face is bruised and why my vulva was 10 times its normal size for so many days. How am I going to talk to people in the outside world about that? Only those who are in this or caring for those who are in it can understand how utterly inhumane cancer treatment is and all the things that having cancer takes away from you. This is supposed to be summer filled with BBQs and firepits and the five weddings we are supposed to be at. I will not be at any. Just like I couldn't be there as maid of honor for my college roommate last year as I was in the midst of my auto stem cell transplant. It breaks my heart.

People say that they look up to me, learn from me, think of me as a hero, but I think that I'm just doing what any of us would do. I'm doing my absolute fucking best in an absolute fucking awful situation. I continue to move forward because I don't see the alternative as a viable choice. I breathe through the pain. I remain as patient as is humanly possible. I know that it's only me that can endure this and come out of this on top so that doesn't leave a lot of choices. I'm doing what I have to do to say alive. I can't give up and let myself down – not after all I've been through.

If I do have any influence on anyone, what I hope they take away is not to take their health for granted. It's to treat your body like a temple because you only have one. Don't smoke: it will kill you. Don't drink in excess. Don't abuse your organs. Don't ignore your high cholesterol or the plain facts about how bad a diet of fast food can be. Don't be a lazy piece of shit – get your body in shape, keep your lungs moving and your legs working because someday you may not be able to. You'll be amazed at the benefits that gives back to you. Carrying extra fat can be detrimental to any recovery you may have to go through as well. Wear sunscreen, always. It's not worth it. It's not worth that one month of a tan body for a death by melanoma.

I've seen it in plain face at all these cancer clinics that I've been to. I've seen people speaking through assist devices. I've seen people with no nose, no eye, carrying oxygen, with black deep unmistakable legions of skin cancer. The problem is that not enough people talk about it and it needs to be talked about. Cancer isn't only a killer. In fact, more and more people survive many types of it, but that survival comes at a huge price that will leave you forever broken. It's tough being a survivor as well: these people are warriors.

It's unfair. It's unbiased. I was healthy. I was strong. Now, do you think I'll be able to grow a baby in this ravaged body? Do you think I'll be able to fulfill the physical challenges I've wanted to in my life? Right now I can't see it, but I still believe that it will come into focus.

I'm not pretending I'm an angel and that's not my point: I drank, I smoked clove cigarettes on occasion at high school parties, I've smoked weed out of an apple. But it was always about moderation and balance. I'm all about inserting the fun and craziness in life, but that doesn't mean trashing yourself and sacrificing everything else. It means respecting yourself and finding the beauty and laughter and fun in all else that is out there. I'm not saying you have to live in fear of landing where I have. I know in my heart that it is not my, or anyone's fault, that I am in this place. What I am saying is that you need to build your body strong so that it can endure the physical tests that it no doubt will need to endure. You need to live every day with full zeal as you have no idea what news will come at you the following day. If you're not happy where you are in your life, change your attitude toward it or maybe it itself. It's that simple. Surrounding yourself with negativity will get you nowhere. You are the only one who can choose how you react to a situation.

I think back to Karin pre-cancer. What if I wasn't an athlete? What if I didn't run? What if I didn't love myself unconditionally? What if I didn't go to the gym every morning before work? What if I didn't eat a healthy diet? What if I wasn't intelligent with jobs that challenged and excited me? What if I didn't have an incredibly supportive husband? What if I didn't have parents and friends that love me unconditionally? I would never be doing as "well" as I am. Build your support system on every level and you will get over the bridges you think are impossible to pass. But most importantly you need to focus on you and getting yourself to that place of gratefulness, understanding and love.

I posted something on my Facebook page early this morning in a groggy Ambien stupor but I think it resonated so I'll share here:

If you ever think you can't do something, you can. I promise you whatever it is, with fearlessness, persistence, focus and drive you can do it. There is no room for second guessing yourself, only room for trusting in the power that is in you and will never let you down.


  1. thanks for this, felt like reading a much more articulate and lyrical diary of my own thoughts.

  2. I am one person who may be able to understand what you are going through, at least proportionally. It feels so weird though to be envious of you and your progress to getting a stem cell transplant. I am still, after 3 years, trying to get to that point. I am growing weaker and weaker and the toll of all these treatments is starting to hit me hard. I hope I get to my transplant and I hope I have your strength to make it through. In the meantime, i have no doubt that you will find your way through the real world again. If you have made it through all that you've been through so far, this is just another hurdle that you'll undoubtedly jump. You may knock it down on your way, but you will make it.

  3. I had the Hodge a year ago. Some people you to say I was brave and call me a hero. I never felt like any of those things. Just someone who showed up at doctor's appointments and went to chemo. They would've done the same thing.
    Karin, you are awesome because you have handled this with grace, bravery, and humor. I'll be so happy for you when you get to bust out the hospital.

  4. You're right, many of us will never truly understand this journey you're on (thank God!). Your words provide a window into the life of a strong, funny, beautiful woman, who just happens to also be a cancer patient. Yes, this terrible disease is consuming your life and will forever be a part of who you are in many ways...but it is just a part - you are much more than a cancer patient. Please don't forget that.

  5. Your observation that "survival comes at a huge price that will leave you forever broken" really resonates with me. It's so, so true. And it's hard to get back to "normal" life because there's a new normal post-cancer. You'll figure it out, one step at a time. Since being diagnosed with cancer, I have tried to heed your advice to savor live, and it is indeed precious. I too went to great lengths to be active and healthy, and sometimes it pisses me off that I'm the one who got sick, instead of someone who knows our bodies are temples but they crap them up anyway. You've been through a tremendous amount of junk that most people can't even imagine, and while you've got nasty symptoms and feel weak, you've faced it with such grace and honor.

  6. Karin, what you have been through so far sounds like hell and it will be a really hard road for the next year. But maybe on July 4, 2012 you really will be "free"!? And you will look back at all of the crap you have had to deal with and realize just how far you have come and how wise you are. As for a baby, give it all time. You are young--think of how many women have kids at 37, 38, 39, you get the idea. You need to let your body heal, inside and out. Then worry about kids--believe me they are great but exhausting. Rest up, enjoy your "health" and your hubby and your dog. Then try for a baby. Thinking of you and wishing you a great summer in the city. Karin Diamond

  7. Immunomodulatory effects of vitamin D: implications for GVHD

    Vitamin D Linked to Survival in Lymphoma Patients

    Curcumin (turmeric) as a novel therapeutic for lymphoma

  8. Hi- I think the fatigue post-allo transplant shocks everyone. I remember going into the clinic and thinking that I won't be able to stay vertical. I even asked the nurses once if I could lie down some place and they found a lovely recliner chair for me. But you know, it gets better- it just seems so overwhelming at first. I am 10 months out and feel fine most days. Hang in there. Rosie

  9. No one but you knows the devastation of heart and soul - no one but you can see the pleasure of seeing beauty- no one but you knows how you think and feel - how you see, smell, touch, and hear - all of it is sooooo affected by your past - yes it is in the past - now you have to heal into the present, heal into a comfort zone, that only you can create and enjoy - how long that will take is anyone's guess - no one knows how long healing, rejuvenating, resurfacing and joyful living will take - but like you said with so many supporting you, in so many cherished ways, you can and will succeed and survive.

  10. Absolutely right...the survival is a very expensive proposal and apart from the physical and mental turmoil that happens it is also the financial pangs that has to be taken care of.

  11. Yikes, that's a lot of food restrictions. Did they give you any alternatives, for protein and iron that would normally be in the fruit and vegetables?

    Six months really sounds like forever, huh? Stay strong. You can do this! I'll be keeping you in my thoughts, that the lymphoma stays away entirely now.


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