Sunday, October 10, 2010

When it's not Cancer

Upon first being diagnosed with cancer, my world simply stopped for the barest second and I could feel something shift and click in my mind. Every-day Ann traded places with a woman that I'd never relied on and that part of me that is a survivor emerged. My vision in that moment was so intently trained on my doctor's discomfort at delivering a cancer diagnosis to a perfect stranger only a few years younger than himself. I could hear those traitorous cloned white-blood cells rushing past my ears as my heart exploded with every beat. I had cancer.

I don't have cancer anymore. Haven't since achieving second remission in July 2008. Now I must live my life in that moment after cancer. Knowing that the genetic defect that lead to the first cloned white-blood cell may lurk deep within my bones is cold comfort.

I don't have cancer. I am living with the aftermath of treatment. My new immune system still doesn't like the decor of its new vessel and has decided to do a little redecorating. It's been working on my eyes and skin for some time now. Lucky for me, the drugs I've been using to keep Ann 3.0 under control worked up until a few weeks ago. The immune system has decided that my lungs, liver, eyes, skin, mouth, and fascia have got to go. The only way it can do this is to kill them as it would an infection. It hasn't quite keyed into the fact that we're all one and the same.

My breathing became tricky and my lung capacity reduced to 59%. Walking to class felt like running a mile. My liver became swollen and my abdomen became uncomfortable. All of the other nuisances magnified ten fold.

I have missed a lot of school for medical reasons. I had to see THE SPECIALISTS and have a liver and lung biopsy. Post transplant, when you have to see a specialist, you're going to see a doctor who deals with things they don't usually go over in medical school. I had three weighing in along with my transplant specialist. They all cautiously agreed that I had GvHD.

I'm now taking 64mg of methylprednisolone in addition to tacrolimus to try and pull the immune system back into line. My immune system is back in the toilet. I must now take three antibiotics, and antiviral, and an IV anti-fungal.

I was surprised with the news that a new PICC line would be inserted into my arm on Wednesday in order to be able to facilitate infusions. I had a little break-down after it was inserted. It all had to do with being frustrated. Frustrated that I have a tube sewn into my arm; frustrated that the IV nurse who did the procedure wouldn't write orders for dressing kits or heparin unless Chris took the training class to get re-certified. Chris has given me infusions and changed my dressings from the beginning. He's taken the class three times. He wasn't with me because I was just supposed to be having a check-up. There'd been no mention of a catheter insertion. It all coalesced to overwhelm me and I ended up crying in front of my transplant nurse. I don't cry in front of my doctors and nurses. I do cry when I get mad or frustrated. I hate the fact.

My nurse was great as was a former nurse who tracked me down to give me a hug. Chris and I returned to MD Anderson yesterday so he could take the class yet a fourth time. He wasn't able to challenge for a demonstration since the clinic was so short staffed. A local company is delivering heparin and dressing changes, so we should be covered. Chris can do this in his sleep. I can walk you through it step by step, as well. The only reason I can't do it for myself is that the line is in my upper right arm and I am right handed.

It's been a very emotional two weeks. My transplant doctor encouraged me to withdraw from school. The steroids wreak havoc on my body and with my moods and academic ability. I have reached a compromise. I dropped down to two classes. The two professors teaching know exactly what's going on and have shown me a lot of kindness as far as assignments and exams go.

I'm disappointed.

I also continue to learn the lessons that come when it's not cancer.

Just because someone you know has been treated for cancer, it doesn't mean that it's ever over. They are struggling with the life that comes after treatment; as a result of treatment. Don't think your friend/acquaintance is finished and has hit the ground running. Above all else, don't tell them that you had no idea that chemotherapy wouldn't be the end of it.

I have heard all of these things. Most of you have as well. I resist the urge to unleash on the most clueless of my acquaintances who continue to tell me that they had no idea regardless of the number of times I tell them that I'm in this for the rest of my life.

Life doesn't stop, it only takes a different fork in the road. The quality of my life is good. This latest set back will only be a nuisance for me, because I refuse to let it become something more. I will finish out this semester. I will take two classes next semester. I will continue to be available to anyone who wants to talk about cancer and the treatment process. I will hold hands and give out hugs and offer comfort. Because I can.


Kcecelia said...

Oh, Ann. This is beautiful and clear. I wish *I* could give you a hug. I am sorry for the continuing struggles that have followed the establishment of Ann 3.0. But, I am glad for your determination and your strength. You are defined by your life as you are choosing to live it, not by your cancer and its aftermath, You are meeting your challenges with intelligence, grace, and the love you and Chris share. Thank you for sharing your journey. You educate us all with your words. My deepest respect and hope for all good things to you. xox.

Marsi White said...

Ann, you are an inspiration. I think you and I share the same attitude. That last paragraph just really got to me. May I share your entry on my blog? XXOO

lisa adams said...

I love you and your attitude, and am going to be spreading this entry everywhere I can. The "when chemo is over and your hair grows back and you look good so everyone thinks you ARE good" syndrome is a real challenge. You do it with strength and grace.

Perki said...

Please do, continue your life, build it like you want it to be. Let this new bone marrow make this place comfortable. Then you'll be up for living a long long time.


stinkerbelle said...

Wow, Ann. What a beautiful, eloquent post. I came on here to comment but I think the first comment (Kcecilia) and subsequent ones say it better than I can right now. I will say that your post moved me to tears and I want to hold your hand, hug you and comfort you throughout the remainder of your journey. I will be here every step of the way...for every set back, every tear, every smile and every victory. I love you!

Amanda F.

Anonymous said...

I like this attitude. Stay strong! After cancer, those little annoyances shouldn't bother us anymore--we got a life to live!


Nancy said...

It's all been said.... I love you Ann. You are an inspiration to us all and your positive attitude, grace and poise are unmatched. Keep on fighting girl. And keep on sharing your story. We are all awaiting your posts! love, n

Ronni Gordon said...

I agree with everyone. This is so beautifully written and so true. Thank you for doing such a wonderful job of explaining how cancer survivors never feel it's over.

Hang in there. You'll climb out of this just like you've climbed out of everything else.

Stephanie Brandt-Chivers said...

Love your blog! As a cancer survivor myself, thanks for the reality check, the beauty in your words and the tears you have made me cry!

I love you and wish you well!

Jim said...

Ann, so sorry you're going through this and having to scale back some. But you're doing the right things and staying focused on long-term goals, which is inspiring and intelligent. Keep up the great work in fighting through the challenges. Jim

Anonymous said...

Thinking of you! And I must agree, you are an inspiration, and thank you for giving us a clear view of many of the realities of your journey.

Anonymous said...

I'm sure you're disappointed but you're not discouraged like anyone else here on earth would be. You have the "keepin-on-keepin-on" attitude that makes the rest of us look like lazy fools. Love, Caroline