A new year and a new hope

What an amazing holiday! December has been a wonderful month filled with moments at home with my loves and holiday celebrations with family and dear friends. You know I am shaking in my boots now, right?

I have restarted physical therapy and am trying to enjoy the daily granny exercises I have been given. I am off Square 1! The road to recovery begins with physical therapy and increasing my strength and stamina. Let’s not make a big deal about it because I don’t want the parasite or evil spirits to notice. Maybe they won’t see that I’m leaving Candy cane in the house sometimes and forgetting to carry her around. Maybe they won’t see that I’m happy and getting comfortable here in my home.

I still have yucky blucky symptoms that make all my doctors shrug with an “I have no idea face”. Sadly I know those expressions very well. My mom keeps asking “why don’t they know? someone must know” she says. They don’t. Not a lot of records or history for ALL survivors who had stem cell transplants. They are fairly new in medical terms and they don’t have 40 years of history to look back on. Besides the fact that everyone is different (me especially) and each ALL survivor gets their own battery of yucky bluckies.

So do I open my little treasure box of hope? Should I risk getting hurt again? I don’t know. I’m not sure I can keep it closed. It’s human nature to hope and dream. Maybe for just a little while I can imagine my new normal. My REAL life where I’m not asked my birthdate 50 times a day. It’s mighty scary.

I recognize that my life will never be like it was before April 12, 2014. But I would like to live a life that resembles it. I was never the healthiest gal on the block. I can live with chronic stuff and manage just fine. I just don’t want to deal with more new stuff. I’ve reached my quota thanks very much.

We are looking forward to waving goodbye to 2015;another sucky year in the Wax yearbook. The only good thing I can say about this year is that I was cancer free. I made cancer my b****. That’s right parasite. You can run but you can’t hide from my newly fortified cells. Be afraid. Be very afraid.

I wish you all a happy and healthy 2016. May we spend time together and make memories filled with joy and laughter.

Woman in the mirror

When I last saw my oncologist, I was complaining about not recognizing myself in the mirror. She asked me “well what do you really look like?”. I was taken aback for a minute. Here is the Dr. who saved my life. A woman I have been grateful to know for almost 2 years and she doesn’t know what I look like? She responded, “we didn’t meet until after you finished the first two chemo cycles, remember?”. Ah yes. When I met my oncologist I was barely tipping the scales at 97 lbs and bald. I took out my phone and showed her a treasured “before” pic. A pic when I was blissfully unaware of the parasite inside me.

Sounds weird right? You would think I would have met her at the beginning and discuss treatment options at diagnosis. It doesn’t work that way. When you are diagnosed with something as acute as ALL, regardless of what you see on tv, you don’t shop your treatment options. There is 1 protocol, which Penn helped create, used all across the country. Wherever I went I would have received the same chemo drugs in the same order.

I was diagnosed on a Saturday and walked into the ER on Monday morning with a small overnight bag. I had no idea what was happening. After several diagnostic tests, part of the oncology team came to the ER and introduced themselves. I don’t remember them. Mostly just residents and fellows that rotate in and out. I call them “flavors of the week”. I was given a room on Rhoads 7 and up I went.

Anyway, my case was closely monitored and reviewed by all the leukemia and lymphoma specialists at HUP once all the diagnostics were done. Once my ALL was typed, I was checked for certain other markers that affect treatment, and then it was GO time. After six weeks I was discharged. A shell of myself, but alive, I showed up on my oncologists exam room door. She had monitored my case and was responsible for my treatment from afar but we had never met until then.

Dr. Loren and her nurse practitioner Sarah are amazing. They saved my life. How can I not admire them? Anyway, Dr. Loren asked me if how I look was affecting my self esteem. My answer? No. I deeply love my husband and I am fortunate he loves me back. He continues to tell me how beautiful I am. Through all the weird changes my body has been through, he is steadfast in his love. I am only interested in what he thinks about how I look. My husband is the only man I will ever want.

What bothers me in the mirror is that I equate looking like myself as wellness. When I finally recognize the woman I see I will have ended this journey and moved on to a much better one. But I think I still look like a version of what might be me in Bizarro world. I want Bizarro Wendy to go back to htraE and her life there.

Anyone have a space shuttle I can borrow?

In medical news, some of my gvh symptoms are slowly abating and others are sadly hanging around. I am slowly dropping the dread pred and finally sleeping at night. I can breathe without pain and take deep breaths again. For those of you with asthma or other chronic breathing issues, I am so sorry for what you go through on a regular basis. I never realized how precious each deep cleansing breath is until it was no longer available.

As usual we are closely watching and hoping to avoid any detours. Positive thoughts, visits, lunches, and invites to small gatherings are welcome. I am re entering society slowly and eating out as long as it’s well cooked.