Dear All,I just know that many of you have angsted about my lack of messages since my scan results on Wednedsay, wondering how I am doing. It has taken me a while to get it together enough to write.
Well, it has probably been the roughest set of days in a long time for me. Wednesday's news was terribly difficult to hear: I had so hoped for a clear liver and bones, so that we could work on targeting the breast and lymph node. Instead, I am told of a "plateau" of sorts in some of the shrinkage, and new spots where there should not have been any. After 7 rounds of intense chemo, I expected more. And knowing how this is the toughest of types of chemos for my condition, I again expected more. This "second line of attack" left me very anxious and scared: if the most intense kind didn't work fully, why should this milder combination of two different chemo drugs be any better? I left Dr. Plowman's office a mess, and with a pit in my stomach that made it hard to breathe. Tears, tears and more tears. Thursday was no better: I began my new chemo regime of IV chemo plus oral chemo - my new cocktail for the next nine weeks until I am rescanned. And the whole time I am praying, "Please let this work. Come one, we're on a new track. Please let me be the patient who surprises everyone with how well I respond". But my anxiety was just overwhelming, and I struggled to keep it together. By Friday, I could not stop bursting into tears at any thought, so I called the hospital and asked to meet with Plowman, as I needed a "pep talk", still reeling from the news of Wednesday. Well, I saw him late that afternoon, for all of five minutes, and to tell you the truth our meeting made me feel worse. As he described, my next series of chemos have the goal of trying to "contain" the cancer. I asked about the goal of my eventually "clearing" it, and he said that he fel it was "unlikely". That he would hope to get to a stage that the cancer becomes "dormant" and that I can have years with my son and family...
I lost it. That was NOT what I wanted nor needed to hear. I don't want to "contain", I want to "clear". I don't want "years" with James, I want "a lifetime". I left his office with such desperation, feeling like, "More change has to be possible", "More has to be "likely". If so many people survive this hell and make it through conditions worse than mine, why not me?
So, as you can imagine, the past few days have been extremely emotional for me, as I work on getting my confidence up, on getting my belief in healing rooted again. I still see Plowman as one of my troop leaders, but I cannot accept his view that I most likley can't clear this disease out of my system for good and will have to "live with it" as long as I can. If I let myself think that way, I have panic attacks, I am bombarded with awful thoughts of dying that knock me to the floor, I am flooded with such sadness and such longing for a future with my son and my family that mind becomes an unbearable place and I just can't stop crying. I am told to get angry, and yet I am just deeply deeply sad and terribly afraid in those moments.
So, what now? I need to show Plowman, and anyone who has doubted the fight in me, that I will fight like never before and will beat the odds. I keep my mind as focused as I can. I cannot begin to tell you of how many pep talks I have needed this weekend to just keep me "sane". "You WILL do this" I am told, "You CAN do this", I am encouraged...."You just have to BELIEVE"... "Don't let the cancer get the better of you"... "Shout out: I want to live!!!!!!"
So, what am I doing? Regrouping.
The scans did not show the level of remission in the lymph node, sterum and liver that we had hoped - that is the devastating news that was so hard to hear, especially after 7 rounds. But the scans did show disappearance of my spots on my spine and on my lungs, and my breast HAS gone down significantly. And some of my liver spots had responded well since treatment started (66% reduction), just not gone altogether. And if you compare my body now, to how it was when I was first diagnosed, I have less cancer. I must focus on that.
It seems like my biggest reponse to the chemo came in the first half of the 7 rounds, not the latter half. I believe that my immune system played a huge part in helping me bring about the early improvement in conjuction with the chemo... but with every chemo hit, my immune system got smashed to zero and struggled to build itself up... so, in my mind, the cancer was talking less of a double knock of chemo & immune system, as my cycles went on. Now with this new series of chemos, my hope is that in getting the chemo on a steady, smaller dose and on a daily basis, my immune system takes less of a one-day hit, and therefore can also fight hard. And this cocktail is a new chapter, a new tack, or as my Uncle Geoffrey tells me, "It's a new runway that you have to take off of, but you WILL fly". So, I focus on boosting my immune system as best as I can - I need to keep it strong. I head to see my nutritionist at the Haven this afternoon. I am tired on this new chemo regimen, and need to find ways to boost my energy level. And I often feel pain in my chest, which could be the chemo, or the cancer. No appetite whatsover, but I force myself to eat, and have upped my juicing. I otherwise "look okay". My weight is still up, my bloodwork is still good. You know, I sometimes lie in bed listing all the parts of me that ARE working well, and that I must not forget are there: lungs, heart, stomach, brain, eyes, mouth, ears, nose, hands, feet, arms, legs, spleen, kidneys, intestine, muscles, back....my body is strong.
But, oh, the mind... constantly in my day I battle sad thoughts, desparing images, that I fight away. Fear of not being around, fear of not having the possibility to see James grow up, fear that my life is so vulnerable - simply fear that I will die. It takes your breath away, it is so overwhelming, and then I simply cry it out. I need that emotional release or I will explode. So, I have my moments in my day, when I weep, and then I pick myself up again, a moment passed. Mornings are hardest for me: when I wake up, for a split second I feel "normal", and then reality comes over me like a tidal wave. But I get right up, and head to pick up James, who is usually awake and ready for breakfast. He and I have our special time in the quiet of the morning, and as I hold him and talk to him, I fight hard to assure him that I am not going anywhere, and that although I am scared, I am going to be there for him for always. He see my tears and just touches them, ready to sing another round of "If you're happy and you know it clap your hands", scrunching up his nose in a toothy smile. Oh, how I love my James.
So, my mindset now is struggling greatly, but it will get there. Chiara has been incredible in the talks she has given me - heck, she should be the psychologist, not me. We have spoken about how I have to accept my illness, but not accept that I can't clear it. That I need to let out the sorrow and despair I feel, but not let that take over who I am. That I must put the cancer in its place and live my live as normally as I can every day. That I must not give Plowman the complete power to dictate my attitude nor my hopes and expectations. That I must not focus on the pain that I feel in my chest, or the tiredness that underlies my actions, but do my best to flow with them, as they will be there for a while so I must live with them. That I need to recognise and hold onto how much incredible love I have in my life, what wonderful support, what truly amazing friends and family, and that with all that posivity, the only possible outcome is healing. I mean, this story just HAS to have a happy ending. I just have to really believe it, even when I am thrown these huge curve balls and shitty outcomes. Truly believing, on weeks like this, is so hard, but I am working on it and fighting for it, with my all.
I am on a marathon, I just don't know how long it is really going to be - that's the daunting part. I just have to believe that I WILL cross that finish line: drained, tired, struggling, but not beaten. I will show Plowman that "containing" feels like second best, and that's not good enough for me. I will "clear" this - however long it takes me to do this, and as long as I have all of you with me. I must learn to control the fear and taper the desperation and sadness when they come, and turn my attention to the progress I have made, and to the progress that lies ahead, behind every corner of this winding road. I deserve that peace of mind. I have worked hard for and will continue to work hard for, that "clarity". Besides my licensing exam :-) and a math test in 7th grade, I have never failed anything I have set my mind to achieve, and have worked my ass off to get there. I tell myself, that this should be no different. It's the stress of the undefined journey, the darkness of some thoughts and passages, and the silent prayers that beg for reassurance, which makes this marathon so gruelling for me.
So, I need you all to visualise my liver and my sternum clear and healthy, to picture me sharing a meal with you when I'm old and battling dentures, to imagine me telling you stories of James' graduation, to envision my coming to visit you all sometime soon - with a lightness to me, because I will have finally put down the load and felt "whole" again. I will have the marathon's finish line banner wrapped around me, a pashmina of sorts, and I will finally be able to sit down and take off my running shoes.
As you all know, Lance Armstrong's books have really really helped me, and I often turn to them for comfort. I leave you with this quote from his book, Every Second Counts:
"You know when I need to die? When I am done living. When I can't walk, can't eat, can't see, when I am a crotchety old bastard, mad at the world. Then I can die... Life is about teeing the ball up high and hitting it hard while trying
not to lose control. And if you shank it, then go and find your ball and try it again...because the way you live your life, the perspective you select, is a choice you make every single day when you wake up. It's yours to decide".
And, lastly, Chiara left me a card under my pillow with a quote and message that I also wanted to share:
"The way I see it, if you want the rainbow, you sometimes have to put up with the rain [Dolly Parton]... Danda, I figure the worse the rain, the bigger the rainbow. So just you wait, just wait for the biggest fucking rainbow you have ever seen."
One last thing: some of you, over the past few days, have sent me emails and left me voice mail messages, all of which I have yet to answer. But know that I treasured every one of them, and felt your presence next to me. I love you so much. And the biggest of hugs to you blog writers and readers, and to the growing troop of well-wishers which protect me from all sides.
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