Sitting with me...

This is a picture that I have in my bedroom. It was a picture that Todd took of the two of us sitting together during my transplant. You can actually see her blood being transfused into my body.

I see it at different times during the day. It never fails to tug at my emotions - making me stop and ponder what my sister actually did for me. She literally saved my life. Truthfully, though, I really don't need a picture to remind me. Whenever I have my blood drawn or even a tiny paper cut, I'm reminded that the blood is hers. I now, and always will bleed Tracy's blood. Sure, my body produces it. But only because she gave me the seeds, or stem cells, to grow it.

I love you, Tracy.

First Movie

First movie at a movie theater since I was diagnosed in September 2007- Kung Fu Panda. We took all the kids. Crazy idea! So how was our outing with the kids? Awesome! We made it through the entire movie with relatively small amounts of wiggles from Aidan (the two year old). A miracle! Hilarious movie by the way. I loved hearing the kids giggle and laugh. After the movie was over they were all doing karate punches, kicks and jumps in the air. Hi-Yah! I was glad that they didn't try moves on each other.

Second Chances

Not too long ago, I was folding laundry on the couch in the living room when I looked up and saw myself in the mirror. In that moment I didn't see myself as someone who'd had cancer and I knew that I had been given a second chance.

It was reaffirming something that I already knew, but in a way that dispelled the sadness. I wasn't going to be angry that I’d had Leukemia or worry about the 'what ifs' or 'whys'.

I had cried at least once every single day since I was diagnosed. But that day I decided that I wasn’t going to shed a single tear over it again. I had already experienced the sorrow, fear and uncertainty of cancer. I wasn’t going to continue re-living it. I was going to live. Period.

6 Months Post-Transplant

I just celebrated my 6 month post-transplant milestone with a visit to the BMT clinic to see Dr. V. Good news: I didn't have to have a bone marrow biopsy-- just lots of blood work. (Well, that's more like awesome news for just for me.) Better news: Only 3 of the 8 medications I currently take are related to the transplant. I have had almost thirty different medications since transplant. Dr. V has been slowly taking me off the Prograf-- the anti-rejection medication. I am down by 80% now with no evidence of GVHD. Best news: DNA (STR) testing continues to show that greater that 95% of my blood cells are donor cells (Tracy's cells). The lab will never report 100%-- but this is basically saying just that. My old blood cells can no longer be detected. My bone marrow transplant continues to prove successful. A TRUE MIRACLE!

‘Believe’ from my nurse Julie

During induction therapy, in one on my hardest hours, I deeply struggled with side effects of the chemotherapy, with pain and discomfort. I had received any and all medications possible and needed to wait almost an hour before any new drugs could be tried. My night nurse, Julie, came and she stayed with me. An oncology nurse who I knew had a lot to do and had a lot of other patients. But she came to me and stayed.

I was sitting up in bed, unable to find comfort from the pain radiating throughout my body. I was completely exhausted, just crying, when she squatted down in front of me and took my hand. All I could see of her face were her eyes because she was wearing a mask. She locked her eyes with mine and told me that I could do it. She told me that she knew I was strong enough and that I could make it through this moment. She sat there with me the entire time, talking to me, comforting me, helping me focus on other things like my breathing and never loosing contact with my eyes because she believed in me. And because she believed in me I was able to believe in myself.

She left me for only a moment so she could receive the medication that would bring relief and sleep. She stayed to watch the medication take effect. She waited for my ‘drug induced’ grin and for me to fall off to a peaceful sleep.

I couldn't have made it through that difficult time without Julie's help. These kind of experiences with people like my families, my friends, the doctors, the nurses, and techs who continually showed such love and support, and the affirmation to 'believe' really have helped me to be a stronger person. Thank you.

“Oil Change”

I went to the local ‘quick car oil change’ place near our home last week. I went inside the lobby to wait. A few minutes later a woman came in and sat beside me. I smiled as she sat down.

A minute later she looks at me and asks “So did you get a bad hair cut or was it chemo?” Yeah, I know! Who asks that! I politely answered that it was chemotherapy and that I had leukemia.

She then went on to explain that her sister had cancer and had under gone chemotherapy and radiation treatment. She said that she was familiar with the “chemo hair.” So that explained her question but still who says that!

It was the first time that I had actually gone out without wearing a scarf! During our conversation, I discretely took a scarf out of my bag and put it on. Perhaps I am just not ready to show my new hair. (This picture was taken a few weeks before this incident. So my hair looks a bit longer.) I'd love to hear opinions- bad hair cut or chemo hair. I'll post the results!

“Why I’ve been so quite lately.”

I am sorry that I have been so quiet lately. To all my friends and family who have continued to support me and who have been part of this journey I feel that I should be completely honest with what my day to day recovery is like and how I am trying to navigate through the experience of cancer. It is now that, the part about ‘navigating’ through this, which in the recent weeks has caused me to feel overwhelmed, alone and incapable of expressing myself. So, I haven’t blogged.

I have been so blessed to share great news from my clinic visits with Dr. V. Truly my lab results have been almost perfect for months now. I have been blessed to have avoided any serious infections, problems with GVHD or significant problems with medications. I have remained in remission and my sister, Tracy’s, donor cells have engrafted perfectly. I love sharing my good news with all of you. I know that each day is a gift. It is one more day in remission and one more day closer to hearing the word “cured.”

But honestly, the recovery is incredibly slow: with constant fatigue, muscle weakness and pain that causes frustration and loneliness. All and any of these symptoms could be caused by medications, effects of the chemotherapy or emotional stress.

I find myself desperately trying to return to “normal.” What I want more than any thing is to regain control of my life. The moment I was told I had leukemia I was robbed of the life I knew. For so long I’ve been a bystander in my own life. When I’ve tried to “jump right in” I became very disappointed when it was so apparent that I wasn’t ready. I am trying to return to being a mother, which as many of you know, is an exhausting job. I find myself limited in ability and strength. I feel like I am in a constant battle with my body and so far my body wins almost every day. It is so frustrating.

Recently a friend asked me how I was doing. I thought for a moment and replied “I think I am in the ‘angry stage’.” She looked at me unsure what to make of my comment. I tried to explain that cancer is like experiencing a loss; like someone you loved is gone. And you grieve for that loss. Weird, right? I know I experienced similar feelings when I was diagnosed like ‘denial’ (this can’t be happening, I don’t have cancer) and then ‘acceptance’ (ok, let’s do this, I have faith that I will be healed). So, I think maybe I skipped the ‘anger stage’ and perhaps depression. I don’t know if that makes any sense… You would think that I would be the last person on the face of the earth to have these feelings. Yet feelings of frustrations, anger and guilt find their way into my day, my relationships and my tear ducts. And truthfully, I was caught off guard by these feelings and unsure of the ‘why now’.

I sit here in think “how in the world can I feel mad? I am in remission, Heavenly Father has blessed my life, answered my prayers and shown His endless love for me and my family.” Yet, I find myself mad that I got cancer, mad that my hair fell out, mad that I still don’t feel “great”, mad that I can’t be that mom that my children need, just plain mad. So, I don’t call my family, I don’t return friends calls and my mind is so filled with questions, thoughts and worries that I can’t sleep . How do you find your way out of that when you feel so tired and your body aches and you can’t muster the energy? Sometimes I can’t ever imagine feeling “normal” again.

Dr.V reassures me that this tiredness and muscles aches will improve as she reduces medication and she added “with time.” She tells me that my recovery is going well and not to consider these rough days a set back. The rough days will come and go she said. And then one day there won’t be rough days like this.

I have learned from other AML survivors that they also experienced similar feelings and had the same struggles. Knowing that my feelings are “normal” and finding comfort, encouragement and support has allowed me to be more open with family, friends and Dr. V. I have chosen to see a cancer therapist, whose experience has been with patients of blood cancers and those that have received transplants.

This is where I am. This was why I struggled so much to blog. This is where I will learn to be healed- physically and emotionally. I know that I do not do this alone. Thank you for the continued encouragement and prayers. This is where I find inspiration- through you.