i have been profoundly moved by the generosity of spirit i have witnessed on the part of so many people. the outpouring of love has been stunning, and truly beautiful. i feel like i am surrounded by an immense cushion of affection, and you have all helped soften the blow considerably.
i had an awkward thought, though. it can't last. it's just a fact that you all are living full and busy lives, and that mine will remain dreary for a long time. the shock of bad news draws people together in spectacular ways, but the shock is transient. i would be willing to bet that my "celebrity" status has reached its apogee, and that the circle of people who remain engaged will quickly tail off. i am writing this for a number of reasons, and one of them is to tell YOU that i understand, and that you don't have to feel guilty about it. another reason to write it down is to prepare myself, to realize that it is natural, and not personal.
please don't get me wrong. i am BY NO MEANS saying that i want fewer visitors, loving comments left on this blog, warm emails, or loving calls. your support is absolutely wonderful, and brightens my days. i am merely trying to prepare myself for the long haul. this thing is going to last a minimum of four months, plus whatever else may need to happen medically, plus the time it takes to put my life back together (whatever that means). i don't know if this is a good idea psychologically, but it seems to me that i will eventually need to stop thinking of myself as in a crisis, and "normalize" this phase of my life to whatever degree possible.
not that i know what i am talking about. i have only just finished the first of eight two-week cycles, and while i am not feeling perfect, i have just had a couple of relatively comfortable and normal days, so it is easy for me to sound strong. i know that as the chemo really takes effect, and as my immune system gets pummeled, that i am in for a lot more unpleasantness. i can't imagine that the nastiness of the side effects will abate, and they will more than likely worsen.
so maybe what i am saying is that i hope that you will pace yourselves. i will need your love and support for a long time to come, under less shocking but possibly more difficult circumstances.
again, thank you all, from the bottom of my heart. i love you right back.
9 comments:
dear josh, from my experience the love and affection and constant thoughts do not necessarily tail off, but they get quieter. and any time you need a boost, say some louder support, you should just ask for it, and the sun will hit the web of support the right way and you will see how beautiful and how vast it is. i have been amazed at how people incorporate someone they are thinking about into their daily practices -- walking, running, yoga, eating fries, making a wish at 11:11 -- your web is just now choosing how to daily dedicate a moment to your healing. love, zpora
Dear Josh,
I believe zpora is correct. No need to prepare yourself for less support!
el jefe
1. Love for a good friend is limitless.
2. While the outpouring expression of love may not be limitless...
3. Hopefully, or expressions of our love will remain commensurate with your needs for love and for space.
4. This does, of course, mean that things run more smoothly when you're candid about where you are and what you want. :)
5. This doesn't, however, mean there's any reason to worry about us pacing ourselves...when you're loved, everything else works itself out.
6. And it's pretty clear you're loved. =)
Love,
Rebecca
Josh,
I am in with you for the entire haul-- long, short or medium. I will talk to my trouble/worry dolls every night for as long as it takes. You are family and I cant help but feel that this is part of my life now too. Just like love for family does not diminish over time but rather grows stronger, I think people will offer stronger support over time.
Love, Jen, Kevin and Connor
I want to use a word that describes a feeling, the same feeling as holding hands on a Paris stroll as rubbing a back after a poisoned stomach. One memory stays forever, the other we laugh at later when we remind ourselves. Thank you for that feeling.
no, no, no... no slowing down in our support. I fully agree with zpora as you are constantly in our thoughts.
Em & Sophie are planning to come & see you on Thursday, where ever you are.
Tchimbe raid, pa molli
Josh, Its really understandable that you would try to protect yourself if you imagine there might be a let down in the amount of love around you. Whether you protect yourself or not, the love will still be there. There may even be a time that you want fewer people and more contemplation. Telling everyone your needs won't push anyone away; it'll just make us be able to respond to you better.
You are in Jim's and my thoughts every day. I am glad Zak and Maggie got to see you in San Clemente. I was home nursing my back that I "threw" out when picking up Wendy's 15 month old baby. (Funny concept...throwing out your back...do you just go buy another one?)
Thanks for posting where you'll be when. We hope to get to see you soon.
Lots of love from someone who remembers you as a very cute little boy playing in the sand at Redondo Beach. (Now you are a very cute big boy!)
xxxoooCousin Grace
Dear Josh,
Susan and I had David K. and Alison over for Thanksgiving dinner. We started the evening by drinking a toast (rather excellent champagne, by the way) to your full recovery.
I am trying to find tips from cancer patients that might help lessen the pain and discomfort caused by chemo (e.g. gargling with glutamine to relieve mouth ulcers and the use of ointments for dry eye caused by the loss of epethelial cells in tear glands). I need to look into the use of anti-oxidants more. Gladys Block spoke on vitamin C today. Hani said one should be cautious about using supplements like lipoic acid that can protect DNA, as you want to kill the dividing cells. I did find a web site that offers a fairly comprehensive list of tips for lessening the side effects of chemo: http://www.chemocare.com/managing/
I also found some stories written by testicular cancer patients and posted on www.livestrong.org. Though these stories do not contain specific tips for mitigating the effects of chemo, you still might find them of interest. I edited them slightly.
1. Bob
In 1985, I was diagnosed with testicular cancer.
It is important to have a great caregiver. I don’t think anyone can get through this on their own. … Thank God I was with her, because she’s a strong, strong-willed person and kicked my butt when I needed it kicked, and was there when I needed it. Because I’ve seen this tear people apart and tear families apart, and it doesn’t need to be. People need to pull together. I think that’s very important.
I’ve had a lot of what I call nerve damage. Still have numbness in my thighs even after 18 years. It feels like my legs are asleep, and that’s just from the nerve damage. It’s kind of like you’ve heard people talk about when they’ve lost a limb. You know, they have phantom pains. I go through that on occasion, and it’s usually through the thigh, through the groin area. And it goes away. It’s kind of sharp pains and it kind of gets your attention, but then eventually, it subsides.
It’s really not affected the way I live. It’s affected what I think about every day, and that’s living the day the best I can. I don’t really think about it, other than I’m conscious every day that I’m here and I’m still alive and living a great day.
I think one of the key things that I learned early on was pain is inevitable, suffering is optional. And I think that’s a phrase that anyone can embrace and should embrace. Because, you know, it’s gonna hurt, but you don’t have to suffer through it, you know, and it’s amazing how your will can help you get well.
I was a marathoner, cyclist, triathlete, and I was invincible. I mean, I wasn’t gonna get cancer. I wasn’t gonna get sick. I do everything right, eat well, exercise. So what I found out was that because I was an athlete, it helped me through the healing process. I’ve continued my exercise program, and I think it’s very important that people continue to do that, because it only helps speed up the healing process.
People, when they’re diagnosed with cancer, they think it’s a death sentence. It’s not. It’s about living. It’s about living and every day should be a living process. I can’t sit here and lie to you and say I wasn’t afraid, because I was, but I never thought I was gonna die, and I think that’s a key. People should never think they’re gonna die. They’re gonna live. I think when you’re faced with a life-threatening illness, you’re more in tune with your surroundings and everything that’s important about living.
Even after 18 years, I still get my annual physicals and checkups, and still to this day, couple of days before the exam, I still get butterflies. What if? What do I do? What do I need to do if this happens again? The reccurrence of cancer is always in your mind and something you have to deal with every day. I think that’s a fact of life. I think that’s just one thing you have to deal with as a cancer survivor is that it may come back, it may not, but you’re gonna have to think about it every day. I think it helps you put things in perspective. I think it makes you think about the day and how you’re gonna approach the day and what you’re gonna do. I think it helps get your life in order and keep it in order.
I think meeting other folks who have been diagnosed with cancer has been rewarding. You look at the way they address the issues, and I think it kind of builds your strength, too, because you look at the way they approach it and kind of go, wow, if they can do it, I can do it. I think there’s a lot of drawing of energy from other cancer survivors that everyone should be involved with, and I don’t think you should do this alone. I think it’s important to draw from other people and their experiences.
When you meet people who have cancer or survivors, it is kind of a brotherhood, sisterhood, whatever. I think it’s important that you stop and you talk and you discuss. I don’t think you should brush it off. I think you’ve been touched, that’s for sure. And, I think it’s important that we bound together to try to beat this.
I found that after I was diagnosed, you really want to run out and do something to help those who are in the neighborhood. I think community involvement is very important, because I think it allows you to channel the energy away from worrying about yourself, but instead, helps you channel it on others, which in turn helps you build your soul.
2. Chris
My doctor and I met before and after each of my treatments The week before my last scheduled treatment, he had told me that my two markers, my alphi protein levels, were well below what they needed to be for me to be considered in remission. He told me, “All you have to do is come back in next week, go through that last regimen or last round of treatments, and you’ll be done.” And that’s kind of how it was. I mean, I walked out of there the last day, and the doctor wiped his hands, pushed me off, and said, “All right, go back to college.” There was never really any thought of educating me or giving me support to figure out, how do I get back into my old life?
The main physical issue I’ve dealt with was that I was in incredible shape before I was diagnosed, training and running in marathons. Since going through the chemotherapy and having my surgeries, I’ve gone from doing marathons to doing iron man triathlons. I’ve definitely, in my athletic career improved greatly since then, but as far as physical, I recover much slower than I used to. Chemobrain has affected me. I talked to my doctor and said, “I can’t remember people’s names. I have a tough time focusing. I have all these things that I didn’t have before.” And he said, “Ah, don’t worry about it. It will go away,” and/or, “You just went through a traumatic experience. It will come back.” There’s people in high school that I knew really well, and I couldn’t tell you their names. I feel really guilty. It’s a definite issue for me in my survivorship. There is not enough awareness generated around it.
As what my expectations were of when I finished my treatments, doctors told me, “You’ll never run another marathon again. You’ll never do another triathlon again. You’ll never be the same.” And they were right about one of those. I’ll never be the same; I’m a much better person. But they were wrong about marathons, triathlons. I got done with it and said, “All right. Time to tell the doctors. If I had to go through life again, I’d write in, “Cancer at age 20.” That would be part of the script. My life changed because of the cancer in relation to how I eat, checkups, what I’ll put in my body versus what I won’t put in my body, I’m very careful about what I will and what I won’t do to my body.
…
I think one thing that really affected me was I really had to come to grips with my own mortality, understanding that five months that could be it. Nobody understands unless they’ve gone through it. It’s something that affected me then. It still affects me today in a positive way, because I’m more thankful for what I have and what I have been through. I think that a lot of times people equate cancer with death, with no longer having the same life as you did before. That couldn’t be further from the truth. You can’t ever give up. You have to fight. And there are days when you don’t feel like fighting, but you’ve just got to get up and keep going. You’re living day to day. Don’t ever let it beat you. Life is just too precious for you to quit. I think I’m living proof of that.
Caregivers have one of the toughest jobs out there. When I was going through my treatments, a big part of me wanted to survive, because I didn’t want to see my parents and my sister watching me die. I think that a lot of times patients really draw from the caregivers. I surrounded myself with people who were thinking positively. It was a roller coaster for them, but it was also a roller coaster for me. And when I was down, they were the ones who were there to bring me back up.
I went through a lot of stages of fear, of joy when I found out I was in remission. When I was going through my treatments, I always tried to stay positive, but there were still emotions running through me that I was suppressing, the fear, the anxiety. Why? What am I supposed to do with my life now? That’s a question that I answer to this day. It’s the reason why I’m here.
Survivorship begins the moment that you’re diagnosed; it’s something that lives with me every single day. I’ve been in remission now for seven years and four months. Despite that window of seven years, I think about what I went through with cancer every single day, if not every single minute of every single day, because it’s changed the person I am. It’s made me a stronger, much better person.
Hi Josh. As John said, you've been in our toasts up at CHORI. The core crew have been updated and you'll be hearing from them in some way at some point. I had a chance to catch up on your posts and I am amazed at the eloquence you pull out of this surreality. Thank you for sharing this with us. I really liked this last post. It must be an insane dichotomy of being forced to take each moment by immediate moment, while at the same time visualizing and planning for the long fight. In trying to imagine life in your shoes, I think I would have the same expectations as you. But by baring open within this blog, you've made it easy for us to stay engaged as you get put back together. Cheers again to you, and Amelie and your family.
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