There Is Light In The Darkness

Where do I begin? In the year since I last posted, life has taken quite a turn. Cancer has really messed with me: 1. Lymphedema and cancer in the lymph nodes involving my left arm have caused me to become paralyzed basically from my elbow down to fingertips. I am unable to move any part of my hand. Try not using your arm for an hour and realize just how much we take the simplest things for granted. Try opening a can, putting on a shirt, driving, giving a good hug . . . 2. Many failed treatments are leaving me with fewer and fewer options. Every chemotherapy and clinical trial drugs have different side effects to get used to. It takes the body a while to adjust. Then, just when you think you've got a handle on it, scans show growth and it is time to move on to the next drug. 3. Being told I shouldn't go back to work due to the cancer drug effects, constant changes, and amount of pain medication. This has been devastating. I love my career. I love the students I teach. And I love my colleagues. Sitting home when I know I should be at work is beyond difficult. 4. Here's the kicker . . . being told you probably have about six months to a year before cancer takes over. This has obviously been the hardest pill to swallow (no pun intended). It is news that is undigestible. This news keeps me from functioning normally because I have no idea what I am supposed to be doing. How is one supposed to act? It is surreal to live in a world where everyone is going about his life normally while my life has become completely abnormal. So I've done the obvious: organized pictures, documented all the usernames and passwords, caught up on letters to Bob and Ethan, written instructions on things only a mother would know for Bob, cried a lot, prayed even more. So this is where I've been. But make no mistake, I have not given up. I truly have faith that God will intervene. My son recently asked why God hasn't answered our prayers about getting rid of my cancer. This one hit me hard. I told him He has answered our prayers in so many ways over the last nearly six years. He answered them in ways we never expected. We may not always understand the ways He is answering our prayers and the answer may not always be what we expect, but someday we will look back and it will make sense. We just have to keep trusting that God is in control. I see this even as other doors are opening with treatments. I will continue to see the light through the darkness while I am still here making memories with my family and friends. I simply ask for you continue to pray for me and my family. There is nothing more powerful and more comforting than knowing people are taking the time to pray for us.

The Most Beautiful Person I Never Met

The cancer world is a strange one. It reluctantly connects you by unfortunate circumstance to some of the most wonderful people in this world. I never met Carin in person, but she felt like a soul sister. We were connected by my sister-in-law who happens to be best friends with Carin's childhood best friend from Maine. Confusing, right? Well, Carin and I became woven together through these friendships and cancer about a year and a half ago as we were both undergoing clinical trials at Dana Farber Cancer Institute. We were email buddies, sharing gains and frustrations. We'd say we were our therapy for each other. We kept hoping our paths would eventually cross through our treatment, but they never did. Carin died at the end of May in 2013. I was shocked because in the last email exchange two weeks prior I would not have predicted the quick deterioration. She was hopeful. She said she thought things were going in the right direction. But the cancer world is a strange one. It would also claiming the life on my high school friend just a month later. In the sad irony of all this Carin's legacy lives on through the people who love her. People who, like Carin, just want to spread joy to others. Taking on new life is the Carin MacLean Foundation, helping people with cancer through some of the financial burdens that come with illness. The foundation just hosted its first annual walk-a-thon in September and was able to help an incredibly deserving family! Much to my surprise, I was contacted a few weeks ago about being the next recipient. My first instinct was to say no. As many of you know, since my diagnosis in 2010, I have been blessed in many financial ways that is seems absolutely unfair to accept anything more. But I have come to accept because it's Carin. She'd be pissed if I didn't. I will do exactly what I think she would do with any of the proceeds. Things we talked about. Carin, I kept every single one of your emails. I miss my therapy sister as my cancer is advancing. How ironic that you are still comforting me through your foundation. The cancer world is a strange one.

Back To The Drawing Board

Yes, it's been a while since I have updated this blog. I guess when other people have endured pain far worse than what I am going through, it really put life in perspective. I couldn't write after my friend Kelly died. It didn't seem right. I was given a wonderful experimental drug that has kept my cancer away for a year and a half and Kelly was gone. It didn't seem fair. A friend recently convinced me that my story was worth continuing. If nothing else, it is at least therapeutic . . . a way to praise God for what He has given me and to find strength as I continue down this uncertain path. That wonderful drug I referenced is apparently not as smart as cancer. My cancer outplayed, outsmarted and outlasted the drug. It definitely let the wind out of my sails. Sitting in the doctor's office getting the same news time after time can really start to break one down. I try to focus on the positive (as everyone says) but the negative part of the mind certainly has a way of seeping through those positive cracks. But I have hope. I will start a new experimental drug this week. It is literally and figuratively a difficult pill to swallow that I will be on medication for the rest of my life. The past three weeks I have been washing out my old drug in preparation for the next, and it has been so nice to feel "normal" again. I think we underestimate our normalcy. I honestly feel great! It is even hard for me to believe that I have had cancer for nearly five years, and, in spite of how I feel, that son of a ----- is still growing in my body. But if Kelly were me, she'd be so happy. She'd be so happy to just be with her family and friends and living her life to the fullest. So you will not catch me complaining again. I am in fighting mode and ready for the next step.

A Card For Kelly

"What would you like the card to say?" Upon dazedly calling a florist to have "happy flowers" sent to my friend's wake, the woman on the other end asked me this question. I immediately envisioned the 3x5 business card she was probably referring to and said, "I can't even answer that ma'am. There is too much to say that couldn't possibly fit on that card." And in my silence that followed, she gave me some suggestions, none of which seemed enough to express the sorrow I feel for what Kelly has endured over the last few months, the pain I feel for her family, the emptiness I feel for not having more time to grow our newfound friendship, or the sense of guilt that has settled deep in my gut. In my most recent cancer recurrence, the woman who had quickly become my biggest Nisky cheerleader was, in fact, dying of cancer herself and had no idea. It is unfathomable. The glowing and seemingly healthy woman who celebrated with me three months ago when I was gifted a car is gone. It is an indescribable pain mixed with confusion, yet there will never be an answer. So, the card reads simply: My thoughts and prayers are always with you. It seems cliche. It seems common. But those eight words could not be any more true. Since that shocking day she told me of her diagnosis, I have not stopped thinking of her. I will think of her until the day we meet again. Every day, multiple times a day, I would pray. I will keep praying until the gates open up and I see that beautiful smile again. As difficult as it all is to understand, I am confident that it was no accident that God had woven our paths together again. I will never forget our last time together. I will always smile when I hear "Dancing Queen" and see "happy flowers" and eat freeze pops. You are forever in my heart, Kelly West Pfaffenbach.

Losing Battle Nonsense

I apologize in advance if I offend anyone with this post, but I hate the phrase "lost his/her battle with cancer". If I end up dying of this wretched disease, I ask that whomever writes my obituary kindly leaves this phrase out. Cancer is truly a battle. Every day people with cancer wake up, put on armor and gear up for whatever challenge lies ahead: doctor appointment after doctor appointment, surgery, recovery, radiation, chemo, side effects, physical pain, emotional pain, mustering up strength to deal with their own diagnosis or prognosis all while trying to make everyone around us believe everything is ok. We fight this battle because cancer gives us no choice. We fight this battle because we want to see our children grow up. We fight this battle because we want to live here on Earth and make a difference in people's lives and leave a legacy, as cliche as it sounds. We fight this battle to show God that we trust Him, and when the battle is over, we don't lose. Cancer never wins. We win and the prize is eternal.

"I have a fighting chance until I'm gone." -Rhoda

A terminal diagnosis is frightening. Back in December my doctor said, "The cancer has metastasized. You are no longer curable, just treatable." Once the shock began to subside, then the pain of all the milestones I will miss came flooding to the forefront--drowning me. I was told the average Triple Negative Breast Cancer patient who has metastatic disease lives approximately two years. But, at the risk of sounding conceited, I've always considered myself to be somewhat above average in determination. This three-year cancer rollercoaster has certainly put me to the test, but I'm scrappy and I have faith. No super-intelligent, triple-doctorate-earning, socially awkward oncologist can take that away from me. Three lesions were found in my chest wall in that December scan. Although slight in size, cancer is cancer and metastatic cancer only means one thing . . . the clock is ticking. I felt torn. Should we just go with chemo or take a chance with a clinical trial? Since the past attempts at chemo, radiation and surgery clearly did not deter this cancer, I felt led toward the trial. But was quickly shut out. A few weeks later, miraculously, a spot opened up. One spot created by God--for me. The upside: the drug was having positive results in shrinkage. The downside: I'd have to travel to and from Boston weekly at first then every three weeks for as long as it was successful. The upside definitely outweighed the downside. Fast forward seven weeks: hotel costs ($1500), gas ($3000), tolls ($100) today's scan results (PRICELESS) Get this: Not only did the lesion in my left lymph node shrink nearly 20%, but the other two lesions in my right internal mammary lymph node and right pectoral lymph node are GONE! That is correct, folks . . . GONE!!! There is only one answer. The answer is prayer. God has been in every detail. And although I have had moments when I start to lose hope, He brings me back. Every time He brings me back. I know I am not cured. But I am not dying of cancer. I am living with cancer.

In Loving Memory . . .

I took this picture almost three years ago. It was an "Adventure Friday" summer day with Ethan. The adventure of the week was hitting mom's old stomping grounds. First stop: Rosendale Elementary School to what I referred to as "The Most Awesome Wooden Playground ever!" Only, to my surprise, upon turning into the school, it was gone. Major letdown. However, my disappointment was quickly replaced with joy at what stood in its place . . . The Awesomest Playground EVER! We both gasped at the most incredible display to ever grace school grounds! Ethan speedily ran ahead to sample the mini Disney World. My feet were greeted by a brick walkway with various names of families who probably donated large sums of money to build this wonderland. One name, however, stood out. Joan Keating. Not just Joan Keating, but "In Loving Memory" of her. Instantly, a wave of sadness soared through my body and my mind flashed back. 1982: As an awkward 7th grader with large circular-framed, tinted glasses that donned my initials in the lower left-hand corner, I decided to give Pop Warner cheerleading a try. I remember being in awe when three older high school girls walked in to help coach this Junior Midget. Joan Keating was one of those girls. Smiley. Peppy. Sweet. Vibrant. Beautiful. Joan Keating was the cheerleader I hoped to be when I got to high school. Only, I did not continue to pursue cheerleading after that year. I was bad at it. But Joan Keating left an impression on me. When I was a freshman, she was a senior, and I was still in awe. I never "knew" her, but when I saw that brick on the walkway I "felt" her. I took the picture. I felt the need to know what happened to her, so I called some high school friends. I found out she died of cancer. A sad realization. It stuck with me. Just last week I came across this picture again and, I don't know why, but I felt a need to find out more. I googled her and found her obituary. She died of breast cancer. She left behind a husband, four children and a huge family ten years ago. She fought hard, no doubt with the spirit of world class cheerleader. In loving memory of a fellow Niskayuna Silver Warrior I will not soon forget.