One thing I've observed as I talk to patients diagnosed with this disease is that it's normal to go through a grieving process for the life you thought you were going to live. I wrote about it in this post "A Time to Mourn." Tammy thought it would help Cara to meet someone who had gone through that process and treatment, and was returning to a normal life. I told Cara she was my little sister in this shitty sorority that neither of us wanted to join. Kappa Lamda Delta--a little Amyloidosis nerd humor, ha ha.
After declining heart function between Thanksgiving and Christmas that required an extended stay in the heart hospital, her cardiac function had started to improve recently and she found out one week before her death that her hematologic response was still good and the disease in her blood was under control She and I talked for about 30 minutes on the Sunday before she died discussing information I gathered for her at the Amyloidosis Support Group meeting and the good news of her prognosis.
On Thursday, her husband Bill left for work and she was still asleep. When a friend came to take her to dialysis, she discovered that Cara had died peacefully in her sleep. It was a real shock to me, almost a blow to the confidence I've had thus far. As Tammy and I rode together for 3 hours to and from Cara's funeral, we talked about the impact a patient's mental and emotional state has on their disease process. Tammy asked me if I'd ever thought about the mental and emotional practices that have contributed to my recovey.
Those of you who know me, know the answer to that question is yes. I think about things A LOT--concepts, ideas, motivators. As I've thought about this over the last 5 days, the 3 things I've come up with in response to Tammy's question are: hope, tenacity, resiliency.
Hope
You need hope--a vision of what could be and a belief that you'll get there. The source of my hope is my faith and relationship with God. Psalm 40 is my story of this disease's impact on my life (you can see a verse from it in the header of the blog--non-mobile version) and I lean on Jeremiah 29:11 a lot--"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."
My church family, my Body of Christ, supported me every step of the way with encouragement, assistance and, most importantly, prayer support. This church family wasn't limited to those that attend the physical building of St Patricks Episcopal Church in Dublin, OH or even those who are Christian or religious. I had support across the country and around the world as friends shared my need for prayers and thoughts. Knowing this support was there carried me through some really tough times.
One of the first work events I attended after my stem cell transplant was a leadership meeting that featured Shane Lopez. He's a researcher with the Gallup organization and Gallup calls him "the world's leading expert on hope." In his talk, Lopez explained the difference between hope and optimism. Optimism is believing that tomorrow will be better than today. Hope is believing that tomorrow will be better than today and I have a role in making that happen. Each patient needs to figure out that role he or she plays in making hope happen. It could be changing to a plant based diet, using supplements, a thorough understanding of the disease (that's mine), a closer relationship with their medical team or any number of things. I think it's incumbent on the medical team and the patient's support system to understand what that role in making hope happen is for each patient and enable that hope to take root. Yes, we know medical profession, green tea and/or curcumin (turmeric) supplements have no/few studies proving their efficacy. But if their use provides hope to a patient and isn't contraindicated, don't put a "road closed" sign on their highway to hope by telling them there's no use taking them. You can read more about hope in Lopez' book Making Hope Happen.
Tenacity
You need tenacity to go through the physical and emotional challenge of treating and living with the disease. Sometimes that tenacity requires physical action--work to regain basic functional strength after the SCT, willingness to go through a difficult treatment, training to regain a former performance status, regular dialysis. Sometimes it requires mental/emotional discipline ie not letting thoughts about the disease overwhelm your thinking thereby preventing you from enjoying the time you have, stopping yourself from playing the "poor me" and "what if" games or trying to ignore debilitating pain The source of my tenacity is first and foremost my love for my family and friends and the love they have for me. I will fight to the end so that I am here for them and to make sure my battle honors the sacrifices they have made and the love they have for me.
A second source is my competitiveness. I've always felt its important for me to "win" if I'm going up against an opponent. I know a lot of that thinking comes from my brother Rob, who is 16 months older than me, and my dad. My mom told the story that the first time I stood up as a baby, my brother came over and pushed me down. For the rest of our lives at home, that dynamic played out over and over--putting me in an oil drum and rolling me down a hill; throwing his shoes at me to knock me off my skateboard because I was winning a skateboard race; tying a rope around my waist and hanging me out of a second story window so I could wash them; telling me when I was 5 to touch the tail of a bee he had caught because it "feels neat", throwing a dart high in the air only to have it land in the top of my head. I've always said it prepared me to emotionally survive corporate America, I never thought it would prepare me to survive the battle of my life. My dad, whenever either of us got a C in school or he sensed any sort of mediocrity, used to inspire us with, "Well, the world needs ditch diggers, too." I always wanted to prove to my dad that I wasn't going to be a modern day version of a ditch digger.
As I told Tammy in a Facebook message (which looking back on it was a pretty crappy way to share something morbid with someone who deals with this and other emotionally and intellectually overwhelming diseases on a daily basis--sorry Tammy) "Have you ever seen the movie 300? It's about 300 Greeks battling 10,000 Persians. Amyloidosis is like that. You know you're going down, you just want to last as long as possible and inflict as much damage as you can on the enemy." To be historically accurate, it was 300 Spartans with 700 Thespians and 400 Thebans but really, how can 700 actors help in any battle?!?!? ;) As Spartan sons would leave for battle, their mothers would reportedly say, "Come back with your shield--or on it." I'm going to beat this or fight hard to the end if I don't. That saying about it being ok to lose a battle but win the war doesn't apply here. When I lose the first battle, I've lost the war...I just want the opportunity to engage in as many battles as possible
Resiliency
Finally, you need resiliency so that as you hit bumps and detours on the road to your vision of hope, you can gracefully adjust. It may require changes in hope--revising that vision of the future due to new developments or changes. It may require additional tenacity--being willing to go through additional and unexpected physically or emotionally challenging treatments and periods.
It is dangerous to get too firmly attached to any set of expectations because you're dealing with a complex disease in different human bodies that will respond to that disease and treatment differently. Many of us with this disease read the studies that are published and believe the optimistic results will apply to us and the pessimistic results apply to someone else. I do that all the time...and that's OK because it drives my hope. "Sure, I know this disease has a 96% relapse rate but that won't apply to me." When Urban Meyer was at the (or maybe The) University of Florida, he regularly referred to our academics as being in the top 1%. Yeah, well that's my hope for my course in AL Amyloidosis, I'll be in the top 1%.
Hope, tenacity and resiliency are the bricks that make the foundation upon which my mental and emotional state is built. But you need mortar to connect bricks together to make a structure that is strong. In my mind, the mortar is a patient's advisors--close family, friends and medical team members whose opinions you trust and who can keep you balanced across the three. These folks need to operate more as coach than cheerleader. They need to be able to tell you that you're letting your tenacity overwhelm your hope. Or you need to be more resilient and recast your vision of hope. Or you need to increase your tenacity or you'll never achieve your vision of hope.
Understanding how each member of the team balances across those three dimensions can help put their guidance into proper perspective. No one is perfectly balanced across all three but as patients, I believe our inner circle of trusted advisors needs to collectively span across all three.
For example, I've learned that Dr. Efebera skews really heavily to the hope side. That's one of the traits I appreciate the most about her. I would imagine it's emotionally challenging to be a physician caring for patients whose diseases have such high relapse rates and relatively short overall survival. Knowing this about her means I need to understand that when she tells me something will improve in 3 months, there's a possibility it may take longer. In Efebera-speak, that means it could START improving in 3 months. She's contributing my hope and I appreciate that but I need to make sure my tenacity is in place to do any work required to further that improvement longer than I thought and that my resiliency is strong enough in case that 3 month milestone passes by with little or no improvement. It's not a time to recast my vision of hope because one milestone wasn't met "on time." Didn't happen now <> won't happen ever.
My friend, Allyn has also helped with my hope. Early on, she described the consequences of my disease and treatment as, "A terrible situation with the best possible circumstances." It made me look more consciously for all those great circumstances that are waaaaay too many to list here. And as I found them, it reinforced my hope because it was a reminder to me of God's providence. I remember my friend Cass, who is an Episcopal priest, saying, "What we may call a co-incident is really a God-incident." It helps reinforce the hope I have.
My husband, Alan, is very focused on tenacity...primarily the work required to get back to some version of normal and to maintain that. When I got out of the hospital, I had very basic physical therapy exercises to regain my strength, not challenging but tiring--walk backward, walk toe to heel, walk sideways. Initially when I was discharged, I had trouble even standing up for more than a minute. And I was tired...physically tired, tired of doing things I didn't want to do, just tired after 4 weeks in the hospital getting new bone marrow installed. I was also basking in the glow of surviving the transplant. I had my eyes firmly fixed on that vision of hope of remission and saw the transplant as the road that would get me there. But a road doesn't get you anywhere solely on its own. You need velocity to get you to a destination Alan was very focused on ensuring I was doing the work needed to get me as close as possible to back to normal. "Drill Sergeant Al's Convalescent Home" is how I described those days. But I needed a counter-balance to my reliance on hope and I trusted Al (and still do) that he has my best interests at heart and I need to do what he says. Yes, friends it does happen.
Amy and Claire have each helped with my resiliency. After the stem cell transplant I went through a period in what I call "no man's land." I'd just gone through the most physically and emotionally taxing experience of my life and I had to wait another 70-ish days to know whether the transplant had worked. Sometimes it doesn't. When I got into a state during which I was fixed on having the life I had before the transplant and convinced that I never would Amy told me "To live the life God has given me." It helped me recast my vision of the future, my expectations, but still maintain my hope.
One night in early August, two days before my appointment that would measure my hematologic response to the stem cell transplant (did all that pain and turmoil accomplish anything?!?!?!?), I was in excruciating pain from my liver. I was in the kitchen crying, Alan was at work so the comforting fell to Claire. Now, I've talked about her confidence and strength of spirit before. When I wanted to make sure she knew how serious this disease is and asked, "You do realize that people die from this?", she responded, "People do but you won't." That night, she came over to me, put her arm around me and pointed my attention to my vision of hope by saying, "Mom, the doctors keep telling you everything is great. You've got to believe that's true until they tell you that it's not."
I am so grateful for the team that has brought me where I am today--God, my family, my friends, my medical team. The second verse of Psalm 40 says, "He drew me up from the desolate pit, out of the miry bog, and set my feet upon a rock, making my steps secure." God set me on that rock but it was built in partnership with and made secure by my family, friends and medical team. For that, I will be eternally grateful.
