{Post Transplant lymphoproliferative Disorder {PTLD} is the cancer I dealt with shortly after my first lung transplant in 2008. A type of lymphoma that was growing in my new, beautiful, donated lungs. It brought on new emotions I've never experienced before, a dreadful uncertainty amongst my doctors about its treatment and cure, and a dire need for my body to change from the inside out to be rid of its effects. It changed me. It changed those around me. And this is what I learned from my experience and hope to share with others to encourage them that they are not alone.}
To this....
Lately, I've noticed a lot of my friends are dealing with cancer. I don't know if it's because of my age, I am getting close to my mid-thirties and so are my friends. Therefore, cancer is more prevalent come mid-age. If it's more of an epidemic in this country and world of ours. Or, if I am just more aware of it, since I've been through it myself. Whatever the case, cancer is tough. It's one of the greatest storms one can face during your lifetime. And if you allow it, it is life changing. With the right attitude, it is life changing for the good.
A picture taken the month before I was diagnosed with my cancer.
Here are 10 things I have learned from living with cancer back in 2008. Because I know so many people affected by it now, I'd like to share those things in hopes of encouraging and inspiring others.
1. Physically: It is one of the most difficult things I have endured physically. Maybe even more so than the two double lung transplants I have experienced. It touches every part of your body and especially when experiencing chemotherapy, it can wreck havoc on all systems. Yet, it showed me just how much my body can truely endure. What I am capable of surviving. How tough my petite 5'7, 100 pound figure was. I believe it was by God's grace and a will to live that I survived. Especially after almost dying immediately after my 5th treatment of chemotherapy that took me straight to the ER and ICU. The reactions of the doctors showed me I was not in good shape. I was bald, anemic, malnurished, weak and with little energy and my heart was beginning to fail. You could see the pity on everyone's eyes as I was wheeled into the ICU. But God allowed me to get through all of that and survive the odds against me at that time. I still had a will to live, and I was willing to give it my all. God protected me through it all. Going through chemotherapy, radiation, surgery will tear down your self esteem while living through it all. But in the end, as you look back, you will be proud of what you endured and your esteem will build back up. Perhaps to an all time high. To show your great strength & resilience; you inspire others do do the same. During their current battles, whatever they may be.
2. Emotionally: I'll be honest. I never dealt with depression leading up to my cancer at age 26. I lived with a terminal disease of cystic fibrosis, but it never negatively affected my mood. I typically had a view that life was beautiful and there were good things in store for me. But after surviving the 50% chance of my daughter's emergency birth, living four months on a ventilator with cystic fibrosis lungs, and then surviving a double lung transplant, my life and view changed the day I was given the diagnosis of cancer. I thought for sure my life was not meant to be and I fell immediately into a depression. I thought to myself, God you got me through this all. I'm a new mom to a beautiful preemie girl & for the first time I can breathe fully and am mucous free. And now You're ready for my demise. All of my life I thought I would die as a result from my cystic fibrosis or transplant complications/rejection in the years to come. But not even a month after my transplant, You want my life to end from cancer. I think most would agree they may naturally respond with depression as well. I didn't handle this as well as I should, now that I look back. The key to being free from depression for me was talking it out. Being able to freely discuss my feelings and emotions, and my thoughts whether positive or negative. Also being able to freely talk with your closest family and friends. Expressing how you feel through journaling, taking pictures, recording the events can be helpful. For me personally, prayer held me together. If you're an artist, an outlet may be playing music or painting. If you enjoy reading, it may be reading inspirational stories and biographies of those who have fought battles before you. If your an athlete, then running or lifting. Look for the best personal and healthy outlet to prevent you from slipping into the easy and natural reaction of feeling sad, blue, and depressed.
3. Spiritually: God is the Creator of life and controls the end of our lives. Even if you have a distant relationship with our Creator, cancer has a way of bringing you back close to Him. It reminds you how precious life truely is. How in the end, money and material things don't matter. Love and relationships do. And our relationship with a God who loves us is the most important. It is ultimately up to Him how things turn out. My prayer life grew during my time of cancer. I was constantly aware of my need & dependence on God. Not my doctors or even my family could give me the peace that He can give. It was also a time I was really sensitive to His Spirit. Not only that but the true meaning of life, it's significance to all, the hurts that everyone experiences, and the hope we have in a relationship with God. Just don't spend time alone in bed. Get out, if the weather is nice have some quiet and peace outside. Or at a favorite park, lake, mountain peak, beach, or backyard. Enjoying the creation God has made will do wonders for your body, soul, spirit & mind. My spiritual relationship also connected me to my local church which was beyond the support I could have ever needed or asked for. Having a close body of like minded people who loved and cared for my every need was an enormous support when I needed it the most. If you're not already involved in a local church, I highly recommend it. The body of believers is God's hand and feet at work. I would not be here today if it wasn't the prayers of God's people and their active support in keeping my spirits up and helping out our family during our greatest time of need.
4. Family: Cancer builds relationships closer then ever. You may have a parent, spouse or child that is not very verbal, but during a time like this you'll hear just how important you are and how loved you are. Not very affectionate? It somehow naturally comes out during a time of suffering. Tough times have a way of bringing couples closer together. Parents and children bond tighter. And broken relationships restored. The love and support from my family during my walk with cancer was amazing. Especially from my husband. His role as caregiver showed me such an unselfishness & unconditional love. A true reflection of God and His love for me. My immediate family of parents and siblings also went above and beyond to show how much they cared for my well being. The connection and bond I shared with my family during this time is unique in my life. I'll always cherish it dearly. I didn't have older children at the time but later with my second transplant. Through that experience I have seen how God protects our children in the midst of our suffering. During a time when we were not sure how much longer I had, our children stayed with relatives. It was a very hard time and I was very sick. My children were 5 & 7. The other day I asked my son about the most difficult and scary times in his life. He never mentioned the time my life was on hold. When we were unsure of the outcome. I prayed and asked others to pray continually of their protection. Sure my kids experienced anxiety, fear, nightmares during the time. But now when we speak about it, I can see all in all how they were protected. Don't get me wrong, kids will be affected by cancer. The older they are, the more impact it may have on their lives. Hopefully, the attributes of being more tender hearted, compassionate and caring than their typical teen peers will be a result of the cancer. I have seen that with my nieces and nephews who watched their dad fight his cancer. If you look for positive outlets, role models and supports for them, and pray for their protection then I believe wholeheartedly they will get through just fine.
5. Friends: People come together during a time of crisis. By means of fundraisers, meals, cards, visits. Friends have a way of stepping up to the plate. They want to show you their love by helping. It's an incredible reminder of those around you who truely love you and care. Who wouldn't want that? It's easy to do during a time like this. But I highly recommend not pushing others away. Text and call people back. Have people over and go out when you can if you're physically up for it. Embrace the love others have to offer you. My strongest relationships today are reflected by how much my friends involved themselves during my battles. Whether with cancer, my transplants, or sicknesses in between. My closest girl friends {& you know who you are} will forever be loved and cherished because of the impact they had on my life during this time.
6. Support groups: Cancer has a way of bringing others closer to you, you normally wouldn't naturally attach yourself to. It's amazing how much we learn from others, bond with others, and give hope to others all because of a shared negative life experience. Support groups have been a huge source of encouragement in my life. Attending a support group while going through both transplants with other lung diseased compadres, being a part of a CF community online that can teach & learn better from one another, and watching other preemies grow that have lived most of their first couple of months in the NICU have all been so encouraging to me. Seek those either in your community or online that have been there. Either they have experienced cancer themselves or they have exactly the same type you have. And they are out there, my post transplant lymphoproliferative disease is in approximately 10% of the transplant population and I found a few of them online! I know one personally. It's so refreshing to know you're not the only one out there. For me, my brother in law and I experienced lymphoma and chemotherapy together right around the same time. We fought the battle together and both won! The majority of other persons with your type of cancer may not be online but many others who deal with cancer will. I believe we are all connected to those we seek and find for a reason. All of those I have connected to were a huge source of encouragement to help me make it through. And now, in turn I support others going through similiar battles.
7. Community: Cancer can do wonders to a community. It encourages and builds healthy lifestyles, it shows how caring, giving, loving and compassionate our neighbors truely are. We are a healthy nation because of cancer. Our communities are healthier. Think about all of the runs out there to fight cancer and raise funds. Research being done on behalf of those living with cancers that teach us to eat more healthy, exercise, avoid bad habits like smoking. All of the relay for life local businesses that come together for a great cause. It prompts and urges us as a community to be selfless, to give up of our most precious belongings. Our time and money. It gets us moving and using our minds about how we can think outside of the box to help others in need. Children will do the most priceless selfless acts, when they see a person in need. It inspires our communities to give and show love. My community has quite a reputation. I live in a small town in the Outer Banks populated by approximately 7,000 persons. But even at Duke in Durham, North Carolina, doctors and nurses have heard of our small town and it's reputation for being a close knit, loving, giving and caring community. We've got heart here in the Outer Banks. I just love that!
8. Change: Cancer and its treatments have a way of changing us. From changing every bad and damaging cell into a new and cancer free one. Changing your unhealthy habits of what you eat, how you exercise, what risky behaviors you may do on a daily basis like smoking or sugar intake. I'm speaking to the choir here, but poor health has a way of changing us. Cancer has a way of changing us. Whether we inherited our likelihood of contracting it or it came incidentally because of virus' we have been exposed to, let it change us for the good. Some of us need that wake up call. Let the changes begin now. Your body will thank you. Your spouse & children will thank you. You'll hopefully live a longer, more healthy lifestyle because of it. Let your mind, soul and spirit appreciate life like it's never done before.
9. Give Thanks: I have learned after living 32 years with cystic fibrosis, two transplants, and experiencing cancer that the best turn around for a frown and a pity party is simply thankfulness. Having a grateful heart for the things we do have: life, freedoms, family, and love can help adjust any attitude wanting to feel sorry for itself or just give up. Sometimes we need cheerleaders to help us in this area, no doubt. But giving thanks and being grateful for others, those especially around you, supporting you, and what God has given us will help us come out in the end with no regrets. No matter what the outcome!
10. Hope and Love: Be hopeful. Hope is a huge component to overcoming any diversity or challenge. "Prepare for the worst but hope for the best." This was the advise of many of my doctors. Dreaming of the future with my family as a healthy, energized, enthusiastic person who overcame this disease is what helped me through many nights I was plagued with anxiety. Anxiety is a natural reaction to stress, especially when it comes to your health. Having dreams and hoping for what may come in the future is an excellent anxiety attacker for anyone. God's got your best interest at mind. Jeremiah 29:11. Hope for the future. Don't be scared or hold back dreaming about your future and talking about it. But also be wise and plan for the future in case something does happen. It's a good eye opener for your whole family to think about planning for your future if either you or your spouse is not here. Otherwise, would we consider doing this? Probably not. Having a will in place, advance directive, donating organs, funeral wishes, burial is all very wise. So plan, but hope for the best outcome possible.
Lastly, love. Accept love from others during this time. You may have little to give, but show your love to anyone and everyone around you. And when you have the strength, give back. Give back what you've learned to someone else experiencing cancer. Or just a difficult time. So much of what we learn can be applied to any difficult life change. Whether it be a broken relationship, death, another physical handicap or hardship, job loss, income loss, etc. I fully believe in purpose to our pain. Use what you've learned to benefit the whole of society. It's how every pain should be dealt with, to help others. And if every person did this on planet earth; how much more beautiful our world would be.
A couple months post chemotherapy, in remission. Hair growing. Love growing.
A year in remission. Our Christmas card 2009. Being Merry & Bright.
And please, if you have anything else to add from your own experience. Please share!
Photo credits to: Mary Basnight, Jessica Claire Norwood, and my husband :)
