No matter how much I try to ignore it, my life has changed…forever. I am no longer the healthy guy that doesn’t have to worry about being around sick people. I am no longer the guy that only goes to the doctor when he really feels sick and home remedies have failed. I have gone from seeing a primary care doctor maybe once a year to having a TEAM that I see and report to at least on a monthly basis.

The (hard to swallow) truth is, I will always be more susceptible to catching colds and viruses. My immune system has been compromised and will never be as strong as it once was. There is no cure for my Leukemia but I will go into remission. I can do things Herbal and dietary that will help strengthen my immune system and help keep me in remission, but I have 3 extra chromosomes, so my system has been re-wired and reacts differently than how it was originally designed to.

My Oncologist says that I need to have a “normal life” and his goal is to help me be able to physically return to that ‘normal life’ where I can go to work every day and not be disabled by my cancer treatments. Sounds simple and it’s a GREAT goal! Here I am, six months into a 12 month treatment program and struggling to string together more than a week of ‘normal’ activity! My brain says “GO” but my body says “NO”. It is so frustrating for someone who’s always been very active and social.

I have learned more then I’d ever dreamed (or cared to learn) about Cancer and bloodwork and all the medical terms that come with them. You might say it’s been a medical crash course born out of necessity. My wife has been my rock and my safe haven amid the storms, yet I still find myself neck deep in a struggle to accept my “new normal”.

I realize that if I’m too hard on myself I could fall into depression. I realize, too, that if I physically push myself too hard, I can wear myself out to the point I become sick(er). So it’s a balancing act of sorts. My focus needs to be on that balance and not worry about work and money and bills. For a type A personality, this isn’t easy!

If I look for the silver lining, my new ‘normal life’ includes some great new friends! My life has been enriched with a solid understanding of the key to life! We all bump around in life almost denying the fact that we all will die one day. It’s never pleasant to think about, but once you have a near death experience (I consider Cancer a near death experience) you live your life with the end in mind. Mortality slaps you in the face and you can’t possibly ignore it. But it doesn’t have to be a negative thing! “Live like you are dying” sings Tim McGraw. Are your priorities what they should be? Where is quality time with family and friends on that list? Being kind to strangers? Helping others?

Finding fault in others is easy. Looking for the good can be hard at first, but gets easy once you learn to focus. Keeping in mind we were created to be social creatures and not solitary individuals, is how you focus. Every interaction we have with each other has the potential to be a learning experience. My approach, or focus, is that I have something they need and vice-versa. Why would I want to tear that person apart? Maybe they are being rude to me because they are hurting? Maybe a kind smile and friendly word or two from me will be just what they need to help them out of a funk or depression. Maybe my criticism will push them over the edge into a depression, or worse. My mind needs to be open to giving and receiving.

With this in mind, I challenge you to this exercise:

1) Focus on only the positive for one day. No matter what happens stay positive and treat everyone you meet with kindness and compassion.

2) Do not utter any negative words, even to yourself when you are alone!

3) Do 1 random act of kindness without reward of any kind.

4) Make a list of what would be important to you if you only had a few days to live.

Email me with your thoughts, reactions or feelings after completing this challenge.

pwildey@gmail.com

Today is day one cycle 6…. Peter is halfway through his 12 month clinical trial!! It’s been a bit of a moving target kind of trial… we have learned so much since the start. The science is astounding, encouraging and scary all wrapped into one. So far there is no cure for the CLL that Peter fights.. there is at present just maintenance, aka, holding it at bay. When it roars, the Dr’s beat it down, and then you just test until it roars again. This is the insidious nature of this Chronic disease… for now. Science & research continue to move forward though, and we have no doubt that there will be a cure found soon!!
When Peter began this trial it was a journey through fear and the unknown. He knew without a doubt that chemo would not be an option for him. Luckily, we asked for a second opinion… and ended up landing in front of a doctor who strongly felt the same. For CLL chemo is not the answer… it angers the cancer cells (after wiping out healthy cells too) into mutations. This cutting edge immune therapy that Peter is on is truly mind blowing, however it has been quite a journey!! His trial was a 2 drug combination therapy, an infusion that attaches to only the cancer cells (and systematically kills only the malignant ones), and the pill activates the natural killer cells to just keep attacking and killing. As I wrote before, Peter’s numbers look fantastic, however he was feeling worse and worse. There was a very scary dark time for us both this winter. His flulike symptoms were making daily life become a journey from bed to couch, foggy head, drastic shortness of breath (so much so that talking became challenging at times from the sheer monumental effort of it). After many tests (which all came back clear), the decision was made by his doctor to take him off the daily pill. It was amazing how quickly he improved!! Within a few days his energy increased, shortness of breath disappeared, and one by one the flulike symptoms also went away. I saw my husband return… awesome!!!! Then the journey changed into, now what…. The clinical trial he is on is composed of the 2 drug combo, if he can’t take one what did that mean?? Well, there is always a bit of hurry up and wait with these things, which also meant “ just to make sure “ he had to begin taking the pill again after a 21 day break. If he reacted again he might be out of the clinical trial… but his blood work looked so good… and then maybe he would be fine. Well 3 days in and he immediately started going downhill again. That answered that. His body evidently does not tolerate the chemical make up of the pill at all. We had heard he may be out of the trial and have no treatment till his numbers got really bad again, maybe they would have to look for another trial to put him in… but as luck would have it, his awesome doctor presented his case and he will be allowed to continue on just the infusion for the second half of the trial. Hallelujah!!!
Since Peter has been off the daily pill his energy has improved so much!!! He has been able to work again, and enjoy life again. His numbers look great!!! His doctor came in to talk with us this morning. He is very optimistic about Peter’s future. He will complete this trial, and then we will keep tabs on him until he needs treatment again. The good news is that there are several other drugs with great promise out and being used now and many more in the pipeline to come. The research in this area is moving steadily forward. His doctor told us from day one that treating CLL with chemo was on the way out .. and it appears to be headed in that direction for sure. Immunotherapy is just huge!!! As far as the conspiracy theory that there is a cure for cancer that already exists and isn’t being used because of doctors and money…I want to say just stop it right now!!! Research is so quickly moving forward!!! Research and testing is done all the way down to a genetic level… where the cures are now being developed from. The mutations that occur during cell division make the research a constantly moving target. There are many reasons why cancer develops, but one of the first things that happens is that the immune system breaks down and becomes unable to recognize irregular cells… by helping the immune system, we are getting closer to finding the cure. I believe without a doubt the cure will emerge in the near future!!! We are so grateful to be here at such a great place where this research is happening!!! Peter is now halfway through treatment and feeling better!!!! We are so filled with gratitude our hearts are bursting!!!

One year ago today, my family was gathered to say good bye to our beloved brother, son and husband, Steve. It was to be the end of his suffering after a hard fought 20 year battle with Leukemia. This once vibrant, strong, proud man lay in the hospital bed, frail and weak, just a shadow of what he once was. It was a difficult sight for all to see. We held hands, sang, laughed and cried. One by one we sat with him and read scripture or just sat quietly enjoying each other’s company. Love hung thick in the air, as if to smother death from our thoughts. Pictures were snapped and shared. Precious moments we all wanted to hold onto forever. One last picture of us 4 boys together…one last picture of Steve and his 2 son’s and 1 grandson, perhaps the only photo of them all together that exists! One last family photo… Bittersweet moments in time that would never be forgotten.

 

A mother’s loss

 

They sat silently holding hands, no words exchanging. Only the whooshing sound of the oxygen being pumped in and out of his frail form broke the silence. There sat a mother and her son in his final hours. The tears that fell from her cheeks were a mixture of sadness that her flesh and blood was leaving this earth, and joy that he was going home to his maker and would suffer no more.

I too sat in this silence, speechless. The tears falling from my cheeks were for my mother losing her son…my brother. I tried to wrap my brain around what that must feel like. My own feelings of impending loss were devastating, but for a mother…to lose a son…unimaginable, incomparable.

I don’t know how long we sat there in the silence, each engrossed in our own thoughts which were undeniably inter connected on some other level that had no care for time or place. It could have been ten minutes or two hours; either would have felt the same. One of the most memorable moments I shall never forget.